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