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



Rough Night

It was a rough night.  Maddie was hallucinating and very scared. She cried most of the night.  We think it was a mix of all the medications, the amount of pain she is in as well as being exhausted. She hasn't had more than 45 min of solid sleep since she woke up from surgery.   She is very irritable about all the lines they have in her. She is truely miserable.  And I can hardly stand to see it.  She definitely responds more and cries more if I'm in the room. So for now, I'm just going in every hour or so for  a bit in the hopes that if I'm not there she will remain calm and finally FALL ASLEEP!!!!  I guess when I'm there she knows I'm just as emotional as she is and she wants me to take it all away.  Ugh. This is awful. They say that most kids her age respond the same way to their mom's being in the room. I guess they know mama will do whatever it takes to make them comfortable.  Aaron is so good with her and she stays so much calmer when he is with her.  I can't stand to not be with her and then when I'm there I can't stand to be there seeing her in that kind of agony.

The doctors invited me to be part of their 'rounds' this morning. From a cardiac standpoint, she is doing perfectly. They say she really does look great.  The plan for today is to get her some sleep first, then remove the line in her left arm as well as her cathetar. Then they would like some kind of movement such as sitting ina chair or trying to walk.  They said she probably willl be moved to the main floor this evening and out of ICU.  They came up with a good plan that will hopefully manage the pain. 

So thats the update.  Things are going to be fine, its just getting there.  She is emotionally and physically drained and exhausted.    Please pray for God's overwhelming peace to be so strong in her and around her.  Also, please pray for sleep. Its so important in the healing process and so far she has had little to none.  When I left the room last we had worship music playing and Aaron was just rubbing her head, so I'm hoping that she has found sleep by now.  And continued prayer for her pain would be great.  It really is as painful as you would imagine it to be. 

Thank you so much for caring for us and prayng and loving us through this.  There is a light at the end of this tunnel!!!

Prayer Points for Maddie

My sweet girl has finally drifted off to sleep after a few hours of extreme aggitation.  She has been quite irritable the past few hours (rightfully so!).  Just wanted to ask you all to continue to pray for her as she has a major recovery ahead.  She is still ,according to the doctors, doing amazingly well, but the painful truth is the recovery hurts really bad.  Please pray that....

1.  She will be able to take big, deep breaths to keep her lungs clear and her oxygen sats up.  This is quite painful for her to do, so  as the anesthesia has worn off she has had a harder time doing this. 

2.  She will now need to work on being able to keep liquids down.  Tomorrow she will eat for the first time and see how well she can tolerate it.  Please pray her body responds as it should

3.  They want to get her up and walking tomorrow.  Its extremely painful for her to move, so this will be very challenging for her.

4. Pray that her blood pressure will stay up and not go low.  The doctor told us he was able to do the whole surgery with no blood transfusion (which is amazing!) and they are hopeful she won't need blood. But if her blood pressure goes low to often they will have to do one.

Thanks so much for praying for her.

Much love,
Kristy

She's Hanging In There..

What a wild ride this day has been.  We have been with Maddie in ICU since about 12:30pm.  She continues to do amazingly well.  This afternoon was spent with the nurses trying to find the balance between 'good pain control' and keeping her awake enough to keep her blood pressure and oxygen saturations up.  There have been quite a few tears this afternoon because she is so thirsty.  She can't have anything to drink until late tonight because they say that almost always if a patient drinks with all that anestesia and medications in them, they will get sick. Her throat is alos hurting really badly from the intabation and her little voice sounds like a squeak toy.  It was just enought to about do me in. Talk about breaking my heart.  She just cries and cries how thirsty she is and says 'its just not fair'.  Somehow I never thought that would be her biggest complaint post-op! :)  Thankfully Papa saved the day with a Sponge Bob balloon and stuffed animal! That got a big smile and she momentarily forgot her thirst.

The doctors and nurses here are absolutely awesome.  Every single one of them.  They are so great at what they do and so caring and sensative to what its like to have to go thru something like this. I can't say enough good things about them. 

I'm so amazed how beautifully she is doing. As the day has gone on, she has become so alert and talking. Keeping her oxygen up on her own as well as maintaining a great blood pressure.  Truely God's hand has been on this day in every detail.  She is dealing with pain obviously. So please continue to pray for her. I am continually impressed with this girl of mine and how brave and strong she is.

And I am exhausted. I feel like I have run a marathon.  More than anything I feel so unbelievably grateful to Jesus who has seen us through this whole journey and will continue to do so as we trust him for full recovery.  His grace and peace are  more than enough.

And now back to some more Veggie Tales and Chimpmunks with my lady.

She. Is. Done!!!!!

Friends,

The doctor just came in at 11:30am and said the words I have been waiting to hear..."It couldn't have gone better."  He said everything went perfectly. She is doing great. She is off the venitalator and heart is working perfectly.  Thank you, thank you, thank you for your prayers. I feel I can't say it enough. You guys have carried us with your prayers.  I told the doctor how many people he had praying for him!!!  God is faithful. Always.  I'm overwhelmed with His goodness.  Please continue to pray for her recovery as it will be  a big week for her.

More details later. 20 more minutes and we get to go be with her....

Waiting...

Dear friends,
  
My baby girl was taken back to surgery this morning around 7:30.  She was upbeat, happy and pretty excited about having a lunch (in a few days) from McDonalds per the surgeons suggestion. ;)  Maddie was completely calm and peaceful.  Just another day in her life.  Thanks for praying.  God's grace and peace was so evident on my girl as she has faced this mountain with incredible bravery and courage. 

The nurse called us here in the waiting room around 8:40am to say that they had just started the surgery around 8:30.  She said, "Your daughter is incredibly brave and absolutely stellar and we had a good time with her and getting to know her personality."  Sounds like she made friends with all the doctors and nurses. Good thinking!

And so now we wait.  I'm full of emotion. Can't seem to go a full moment without tears filling my eyes, but I know God is good and His plan for her life is excellent. And we will be able to testify to that as the rest of this week plays out.

We won't hear anything again until the surgeon comes to talk to us afterwards.  We think it will be between 12-1pm.  We will keep you posted.   Thanks for being a part of our prayer team.  Their are literally hundreds of us all praying and interceeding for Maddie.  I hope you each know how thankful we are to you for your prayers.  Keep them coming!

                                                   Sweet Maddie all ready for surgery!

Kristy

Surgery Time Change and Some Gentle Reminders

Just wanted to let everyone know we have had a change in time again for the surgery. We are back to first case of the day (woohoo!).  So we will leave here around 4am and surgery should be around 7 - 8am.  Thanks for keeping her in your prayers during this time. She will probably be in until anywhere between 12 -2pm.  Maddie's two concerns she has is how her scar will look and that she will be really grumpy to the nurses when she wakes up. :)  So as you pray, please ask God for His peace in her concerning both of these things. 

Gentle Reminder from a loving Father...

Today my nerves have been on edge.  I'm a bit jittery and just ready to get done already.  I'm finding that having peace is sometimes a choice.  Just for my own sake I wanted to write down the gentle reminders God has given me. He really is so awesome and faithful even when we are weak and doubting. 

~ When Maddie was a baby and in the NICU she had one day in particular that was awful.  She had a really bad episode of apnia and bradycardia and the nurses were having a difficult time 'getting her back.' I felt like I was watching a horror movie as I watched nurses and doctors running and scrambling to get my baby girl to breathe again.  One nurse had hollered to another nurse to get me out of there.  I remember feeling like I was in the midst of an awful storm, but all that went thru my mind in that moment was the song "Turn Your Eyes Upon Jesus."  It played over and over in my mind. Thru the years, I have looked back on those 20 minutes and know that Jesus spoke directly to me. To my heart. To my spirit.  That song has been so special to me since that time.

So today during worship in church. I was really having a difficult time keeping my thoughts positive and not letting fear creep in. God knew and reached down and spoke directly to me again as the worship leader just started singing acapella "Turn Your Eyes Upon Jesus."  It was as if He was saying to me, "I've got this. Its done. She is already healed. Just walk this out in faith."  How wonderful that even when I'm unfaithful, He loves me enough to remind me for the millionth time in such a gentle, loving way.   And in a way He knew I would 'get it' immediately.

~ After church today a guy we didn't know came up to us and asked who her surgeon was going to be.  I told him the name and he said that the same doctor had just done his open-heart surgery this past February.  He told us what a wonderful experience he had and how incredible this doctor was.  It was just awesome and so encouraging  to talk to someone who has just gone thru this whole thing and see he is just fine. 

~ When we were leaving UVA on Wednesday, we ran into a family we know from church. We chatted and I told them what we were doing there.  They then told us they were there to see the same doctor we had just had an appointment with because their daughter had the exact same defect Maddie had and had gone thru the same surgery when she was 2 years old. Now they just come for her yearly checkup.  I just thought, isn't that incredible, that as big as UVA is and how many people are there on any given day that I would bump in to them and hear their story.

None of these things are lost on me.  I know God has spoken to me thru all of these people and they don't even know it! I just thought, as emotionally draining as this journey has been, I don't want to lose sight of the great things God has done just for this mama's heart.  I know He cares.  I am feeling surprisingly calm right now.  And choosing peace...

Maddie Update

First I just wanted to say thank you all so much for your support, emails, calls and concern for Maddie. I have really been overwhelmed by all the support we have recieved.  We definitely have felt your prayers.

We went and had her pre-op appointment yesterday.  It went well. I was secretly hoping they would be shocked and tell me it had closed up on its own. But thats not what happened. Everything is just as it was. They went over all the details with Maddie and me.  I would be lying if I didn't say I am completely overwhelmed.  I feel like I just need to let some of the stuff they said go in one ear and right out the other.  This is just so huge and out of my control all I can do is trust. And pray.  The doctors are so optomistic and assure me that this is 'an easy fix' in the world of heart surgery.  But in my world this is huge and scary and I just don't like it. ;(

A lot of people have sent emails asking me what exactly Maddie's heart problem is, so let me take a minute to explain. She was born with a hole in the atrium of her heart. When she was a baby they thought it would close on its own and told us not to worry about it. Two years ago our primary care doctor heard the murmer again during a routine physical and really encouraged us to see the pediatric cardiologist again.  We saw him that summer and he took measurements, readings and pressures of her heart and said we would just use these as the baseline and he would see her every year until she graduated and just compare them each year.

When we went to her appointment last August, it became very apparent that their had been changes.  The right side of her heart was slightly larger than it was just a year before.  What is happening is her lungs are getting twice as much blood as they should be.  So a portion of her blood isn't going thru the whole body, its just going in an endless circle.  This is making the right side of her heart work harder and the fear is that it will continue to get larger over time. 

She currently has no symptoms at all.  Which made this all the more difficult to decide to do this. However, if she didn't have it done it would be to great of a risk for her to ever carry a baby and the risk of stroke and heart failure are huge risks at a young age.  There are people that have this defect that live their whole life and have babies and are completely fine. But their are also people who have massive strokes at 26 years old.  We really feel that God has been in this and used the doctors in her life to find out about this while she is young (some people live their whole life and never find out about it until its too late).  I feel a great deal of pressure making such a huge decision for her, but we know this is whats best for her. The doctor has said the recovery is much quicker and better before puberty.  The longer we wait, the worse and more painful her recovery would be.  So now is the time.

We are all set for Monday.  They told us yesterday that they had a  baby that came in that is needing surgery so we have been bumped to around noonish.  The surgery will be 4-6 hours long.  Once she is out of surgery she will be taken immediately to ICU for the next 2 days.  Their will be milestones each day that they will be looking for.  First one being surgery going well. Second one being coming off the ventilator, waking up and talking, etc.  Once they have the labs that make them happy, they will want to remove the lines in her left arm and neck that will be stitched into her skin.  She will also have a tube coming out of her chest for a few days which will help with draining fluids off of her heart.  Once she loses all this stuff she will then be moved to the main floor where we focus on recovery, getting up and walking, drinking, eating, etc.

Please continue to pray. Pray for the details. That she would have no problems coming off the vent, that her heart would take back over with no problems, that there would be ZERO complications and everything would go smoothly. I am just praying that the presence of Jesus would be so strong in that OR and that he would guide the surgeons hands.  And please pray that she wouldn't feel too much pain.  I'm so concerned about the amount of pain she will be in and am just praying that God would take that from her. 

Thank you so much for your support. I will probably just update on here as I have time thru the week.

Kristy