A Beautiful Heart

Yesterday marked three weeks since Maddie's surgery. I'm amazed at what a difference three weeks makes. Maddie is totally and completely back to her old self.  We went back to UVA yesterday for another post-op checkup with Dr. Hoyer.  She had another EKG and echo and everything looks absolutely beautiful.  He even said her heart looks pretty much back to normal size. That was amazing because he said normally its quite a few months before that happens!  This girl is on fast forward speed with healing in her body.  A walking testimony of God's faithfulness in her life. 

***Maddie's friend Alli come along with us and it was a good thing! It was a three hour appointment so they definitely entertained each other.  Everything from Connect 4 to making up new dance moves. :)***

So it was a really good report.  He did have one thing he said he wanted me to know about that was a bit of a downer but not to worry too much about it. :)  Evidently her aortic valve is leaking just a tiny bit.  When the valve opens and pushes the blood forward and out, its supposed to close and not let any blood back thru.  She has a 'trace' of blood coming back thru.  He says that many people have this and the only reason we know about it is because of the numerous echo's she has had because of her atrial septal defect.  They measure on a scale of 'zero, trace, low, moderate, severe.'   She is at a trace.  So he says its no big deal. They will just keep a watch on it over the years.  He suspects nothing will come of it, but now that he knows about it, we need to monitor it.  He said if it did change drastically over the years, she may need a valve replacement down the road. But again, it may never need a thing done. I must say it was strangely reminicent of when they  told us about the hole in the atrium the first time and how many people have it and never need anything done. I definitely had a moment of that sinking feeling and here we go again. But since then, I've decided I'm going with just believing its no big deal and won't change! :) He has brought her thru so much in her short 8 years.  I know God's hand is all over this girl and He has an amazing plan for her life. 

We also went and visited the PICU to give them some cards Maddie had  for the nurses and Dr. Gangemi. It was a bit surreal to be there three weeks later and to have to literally keep her from running thru the halls and being crazy.  As we passed her room in the PICU, I couldn't help thinking back to just 21 days ago when she was laying in that bed in so much pain and so helpless. I remember thinking what a long recovery this was going to be and hoping she would be healed by the time school started back.  All I can say is God has been incredibly good to her (and us!).

So we are free of appointments and UVA until January!!!!!  We told the doctor Merry Christmas as we were both elated that we won't be seeing him until after Christmas.   So thats the update. Things are awesome and we are just enjoying the lazy days of summer now.

Recovery at Home...

Life somehow got way busier when we got home.  Just don't have as much time to blog and update...I wonder why?! :) Nothing to do with 3 other kids or anything I'm sure. Everything is going well though. All thru the week I have found myself thinking, "At this time last week... ". Its so good to be on this side!

 We went to our family doctor on Monday (because that was the plan when we left the hospital).  We talked with him about her headaches and her not being able to be upright.  He really felt that she was dealing with a spinal headache. (She was given a spinal at the end of surgery to help with pain management for the next 24 hours).  After talking it over with Aaron that afternoon, I decided to call UVA to see if we should really be pushing her as hard as we were to sit up and walk around if she had a spinal headache.

After talking with the nurse, she contacted the cardiologist and he felt like he wanted to see her right then because it wasn't normal to be having headaches like that. So we packed up in the car and headed back to UVA.   They did  an Echocardiogram and EKG and found her heart is still looking gorgeous (Yay!) so that was very good news.  We talked at length with the cardiologist, and he decided to take her off one of the pills she was taking that helped push fluids through her body. She was taking it to minimize fluid building up around her heart.  I had read the insert when we got it from the pharmacist and it also had mentioned that they used this pill to lower blood pressure. Maddie has a low blood pressure normally, so we were thinking this pill was probably just tanking her blood pressure when she was upright causing her to have these massive headaches.  The Echo showed little to now fluid, so he felt it would be safe to take her off.  SO we are just praying that no fluid builds up. They have told us different signs to watch for, but we are believing she will be fine. We will go back on July 11 where they will do another echo and EKG to check.

Tuesday morning we had a perky, energetic girl! It seems the pill was the culprit and it was doing exactly as we suspected.  Since then she has been up and around almost like normal.  We really are having to remind her that she has to take it easy. I thought the surgeon was exaggerating when he said 'you are going to have a harder time keeping her from doing things rather than trying to get her up and moving'. He was right! One week in and I find I'm saying, "Maddie slow down. Don't jump. etc.".  I have earned about a hundred new gray hairs just this week! :)  Praise God for His Hand on her and the doctors as he guides them and us in the best way to care for her.  She is healing beautifully. She has even just started getting a bit of cabin fever and begging to go somewhere. So she had her first big outing to the downtown library to load up on some books last night! :)

It has been wonderful being back home and getting in the groove of things.  The kids are delighted to have us all back. Aaron doesn't have to go back to work until July 4 so we have been enjoying alot of down time together. Which is exactly what we need as I am feeling so much more tired this week than last. I guess the adrenaline that gets you thru things like that is now gone and we are tired! All of us have been sleeping in until 9am or so! Its been glorious! Exactly how summer should be.  Its wonderful knowing the whole summer is stretched out before us and that this is behind us.  God has been so gracious to us.

And just because a post with pictures is so much more fun....

Getting big sis outta bed....

She's been getting a lot of lovin off of these two.

 I'm pretty sure these two have been saving their energy and mischieviousness up just for when we got home! They make me tired just looking at them.

 Trying her hardest not to smile...FAIL!

 Ah, things are getting back to normal. Everyone is picking on each other. :)

 My lovely ladies....

**The Kobester does not stick around or have time for me when the camera comes out which is why their are no pics with my little man. :)

Thank you to all of you have called, emailed, prayed, sent cards, flowers, balloons, food, helped us with the other kids and everything else we have recieved.  You have been the hands and feet of Jesus to us and we just can't say thank you enough.  Maddie has been delighted with every card she has recieved, so thank you! We have felt loved and cared for by so many we know and by many we have never even met.  I just want to make sure you know how much of a difference you have made as we have gone thru this.  We are very blessed. 

Home Sweet Home

Well it certainly seems home was the right choice for Maddie.  She has never been happier to be here! When she got in her bed she kissed her blankets and pillows. :)  As we  were driving into the neighborhood some sweet friends and neighbors had made a big welcome home sign for her. It was so sweet and made her feel completely special. Then we pulled up in front of the house both Pres and Kens were at the windows jumping up and down and there was a big bouquet of balloons on the porch to greet her!  Presley and Kensi were just beside themselves when we got out of the car. It was so funny. Presley just keep bending over to her knees like she had to catch her breath and screaming, "mom".  It was great!  It was a sweet reunion for all of us for sure. Those two little girls missed their big sis like crazy.  They were hugging and kissing her all over and Miss Kens is taking such good care of her! Even the Kobester has missed his sis and vice versa. I knew they loved each other deep down. :)


Her spirits have definitely improved being home which is great.  We are still fighting some of the same battles that we were fighting in the hospital. I have to keep reminding myself we aren't even a week out yet.  Today she ate. I mean REALY ate at every meal! It was so encouraging. She is still getting really bad headaches if she sits up or walks. But at least it seems she is back on board with eating and drinking so that is encouraging.  If she's laying down, she seems to be back to the old Maddie.  I love it! Its only when she gets up and the headache comes that she seems in pain.  The ironic thing is she can move around and walk and get up and down just like normal.  Its amazing really.  Everyone that has seen her has been shocked how well she is moving around. Praise the Lord for His Hand of healing on her body.

I am feeling overwhelmed.  It takes a lot to care for her here and make sure she is doing what she should be doing.  Maddie is strong willed in personality, so this is no different.  I can tell she is feeling emotionally drained. I know this is taking a huge toll on her emotionally and I know there is a lot going on inside.  I just want to sit and cry when night comes.  Tonight she was so tired and hurting and she didn't want to swallow a pill and she just kept crying and screaming, "why are you doing this to me? Its so hard for both of us.  I just want to snap my fingers and make it better.   I just have to keep reminding myself what God has just brought us thru and focus on how He will continue the work He has started in her until it is complete.

Please continue to pray for her.  Pray that these headaches would be completely gone and she would be able to sit up and that she have strength and energy emotionally and physically. Thanks for your continued prayer for her as her body continues to heal inside and out.

Guess Who's Coming Home?!?!

Miss Maddie slept the whole night. Got up this morning and is sitting in the chair (YAY!). She ate five tater tots and five bites of applesauce. But most importantly she is smiling and talking like the old Maddie. Thanks so much for praying for her spirits.  Everyone agrees that what this little lady needs at this point is to be home and surrounded by normal things. 

We have just gone over all the discharge instructions.  She is going to have to be taking it easy for about 6 weeks or so, so any of her friends wanting to come and entertain her, please feel free!  She really does look fantastic.  How is it possible to have gone thru a week like she has gone thru and still look so stunning?! ;)

We are leaving the hospital in about 30 minutes!!!! Woohoo!

On the Home Stretch...We can do it!

What a day.  Maddie had many ups and downs today. Her mama did, too. We had her up and walking a good amount which was great thing, the bad thing was everytime after we walked she had a massive headache and threw up.  She has hit a bit of a hump in her motivation. She just wants to lay in bed and not eat or drink.  Unfortunately those are the three things she has to do to get her body back like normal.  She just cries and is so upset when she has to get out of bed. Its heartbreaking.  We had an awesome doctor tonight who was able to give her some tough love and get her up and moving and made her sit in the chair for about an hour. She also had her take a bath.  Maddie was not happy about it, but she has to do it to push past all this.  I was so thankful for that doctor because I just cannot do it today.  She's tired and in pain and doesn't feel good and I just can't make her do these things because I feel like I will just cry along with her. Seeing her like this seems like more than I can bear.   So, she was the right doctor for us at the right time.  Aaron has also been amazing with her.  So pretty much I've just been a hot mess. Everything about this just feels unnatural to watch your child in so much pain and not be able to do anything to make it better.  I know that this is just how it goes, but its just hard to watch.

From a cardiac standpoint, she looks awesome and no longer needs to be in the hospital.  They pulled the chest tube this morning. Maddie was a champion for that. They literally just pull it out of you. UGH!  She said it hurt but she just laid so still and let them do it. 

She definitely has had some hospital blues and just wants to go home so badly.  Thankfully she had quite a few friends come visit her today and love on her and that definitely lifted her spirits some.  She was also so excited to get a visit from her teacher at Smithland yesterday.  She was so excited she came to see her.

We have talked at length with the doctors and I think everyone feels that if we can get her to just drink and eat in the morning, we will probably go home by tomorrow night.  The cardiology team has released her from having to stay.  The thought process is that most of what she is dealing with now is completely normal and most kids perk up and eat once they are home in their surroundings and in their bed.  I do think that will help her tremendously, however it does scare me a bit to take her home when she is still struggling to do the basic things like eat and drink and walk without having to make her do it.  I know we can't just move in here, but on days like today I think it sure would be nice to have 12 doctors around you at any given moment and have her heart monitors hooked up so I can see what is going on.  I know God has brought us so far and He will be right there with us. I get another chance to keep practicing faith and trust....yipee.:)  haha. Seriously, I feel its time to keep taking these steps of faith.  I definitely have had some moments today where I have to fight that panicky feeling. And I just think to myself how silly I am.  Here God has brought us through the most major thing Aaron or I have ever walked thru. Of course He will be home with us too and equip us to care for her.  Taking steps of faith is just so scary sometimes.

Ok. I'm tired and rambling. Just wanted to update everyone as to where we were at as so many have asked today.  I'll stop rambling and end with some pics of her day.  OH, and please pray for her tonight and tomorrow that she would be able to eat and walk around without getting sick. Pray for her confidence to be increased and for encouragement for her weary spirit.  This girl really is amazing. She has been thru a battle this week and I'm so, so proud of how she has handled it.  God has big plans for this little lady!

Maddie with Duffy the Lion. He has a 'special mended heart' too.  Somebody here gave it to her.

 Working out with her physical therapy buddy.

 She did these stairs like a rockstar

This is a pic from two days ago but I thought that smile was priceless. That smile was put on her face by an aunt who brought her a special surprise. :)  It even got a fist pump outta her!

Playing games with Dad in bed.

 Her best friend Alyce (and they have the necklaces to prove it!) visiting today. Nothing like watching some cartoons together in the hospy!

 Can you feel her pain and frustration!? Doesn't this make you just wanna cry?  This is after a long day of being pushed the hardest she has been pushed since surgery.  She just kept saying, "Can I get in bed now?" Poor baby.

 Pray that this frown will be gone by tomorrow and there will be a renewed spirit in there.

Thanks for your prayers!

Two Step Forwards, One Step Back

Recovery is such a roller coaster. The highest of highs and completely draining all at once.  Please pray for my sweet girls tummy.  She has had a really bad stomach ache since around 6pm.  She got sick a little bit ago.  They say this is normal sometimes and we will watch her overnight to make sure its not a stomach bug or infection.  Please pray its neither of those and she will stay on track with how well she has been doing and renewed motivation to keep pushing herself.  She has lost some of her steam tonight.

Also pray for more good, solid sleep.  We are sharing a room with a 3 month old tonight and he hasn't been very happy. :)

Thanks friends!

Day 3 and She's Doing Great!

Well a little sleep really does do a body good! Yesterday after I posted, Miss Maddie fell right to sleep and got to sleep for close to 3 hours until her physical & occupational therapists came and woke her up.  She was dealing with things SO much better after some good sleep.  As time is passing she is able to do a little more.  From the doctors standpoint, she continues to be perfect.  They are so impressed with how fast she is doing things.   There are still some tears as the pain medications wear off and she starts to feel some pain, but overall she is doing wonderful.

Last night around 9:30pm she graduated from the PICU to the main floor! It was great.  All the nurses celebrated with her and we got settled in our new room. (She is well loved by all the nurses here. Her PICU nurse was so sad to see her go. ;) ).  It was perfect because she was just starting to get all panicky about having to go to sleep for the night.  The PICU rooms are full of equipment, alarms, people, etc and as it gets dark out, everything seems scary to her. So our new room came at the perfect time.  Its much calmer here.   I got to sleep right beside her bed in a recliner and she fell asleep almost right away and slept the whole night.  It was wonderful and a direct answer to prayer!  She hasn't been the least bit upset in this new room. 

So yesterday we got everything acccomplished that the doctors had planned for her. Her  cathetar came out as well as her arterial line in arm which made her extremely happy.  She has loved visiting with everyone that has come to see her.  I think it hleps distract her from  everything else happening around her.

We are so blessed. I'm reminded of that constantly as I see these sweet kids all around us dealing with some heavy stuff.  Its heartbreaking and has really helped me keep perspective on how incredibly blessed we are to have healthy children. 

The cardiologist talked with me this morning and said they think they will be ready to pull the chest tube out tonight as well as get rid of the central line in her neck.  After this happens she will be free from everything except one IV in her hand and the leads on her heart. Yay!  From what I hear, things take off super fast after the chest tube comes out.  So they have said if we keep going like this, its possible that we could be home on Friday!  We also need to get her to swallow tablets so she can take iron as her hemoglobins are a little on the low side. Once the chest tube is out, they will switch the pain meds to some high-powered IB profen and off of the IV meds and see how well she tolerates that.  Once all this happens, we will be close to going home.

Here are some pics of the progress she has made...

About two hours after surgery.

This was today after putting on some real pajamas and getting to sit in a chair. Doesn't she look great?!  She has kept that sweet, heart pillow with her at all times that a friend made for her for the surgery.  Thanks Jane!

Taking the halls of UVA by storm!  She got up and walked for the first time today.  Evidently she walked very far for it being the first time. She walked all the way to the school class room to do some crafts, but after walking all that way she was too weak and sick feeling  to stay so we came back and got in bed. :)

Taking it easy after her marathon!

How wonderful to see that smiling face! What a journey this has been.  My heart is so full.  What a gift we have been given to have a perfectly, completely healthy little girl with a whole heart now.  God is so faithful.  I want to end this with a verse a friend sent to me that describes perfectly what has been going on with us this whole week as we have been carried in the sweet arms of Jesus and loved & supported by so many family and friends....

"The Lord your God is in your midst, the Mighty One, will save; he will rejoice over you with gladness, He will quiet you with His love..." Zephaniah 3:17