Finally Home!

I will keep this one on the short and sweet side. I am so glad to be home, to have Peyton home and to be reunited with our family. This was a very difficult time for our family and it was the encouragement, prayers and support from all of you that helped us get through it.

Peyton was glad to be home and to see her sisters and brother. She played for a very short while (lightly), showed off all of her goodies that people gave her, and then quietly made her way up to her room to get ready for bed. It didn't take much to poop her out tonight.

As I said, it feels really good to be home and the thought of being in my own bed makes me really happy. No monitors, no beeping, no nurses coming in for vitals every 4 hours and no doctors waking me up in the morning on their rounds. Tonight, I will sleep well and I will be sure to thank God for helping us and Peyton get through this ordeal in Charleston. Our new motto with her is "one day at a time." We are going to celebrate the success and try not to worry about the other issues. We will take them one day at a time. We are just thankful for what we have now and that is our family (all of us) back together again!

Thanks again for your prayers, thoughts and support. I feel like you all jumped right in the trenches with us and we appreciate it!

Post Surgery Update

Peyton resting after surgery



As most of you all know, Peyton's surgery was a success. We spoke to the doctor afterwards and he informed us that they were able to successfully place the pacemaker near her left armpit and that it only took one incision to place the lead on the heart and the pacemaker. The original thought was that it would take two.

Peyton was sore right afterwards and will be for several days. The doctor blew us away when he said we could probably go home as early as tomorrow (if she eats, drinks and uses the bathroom well). He also added, that he saw no reason that Peyton couldn't be back on her bike or a soccer field in 2 weeks. We will probably stretch that out, but what great news this is!

We have received our pacemaker instructions and I suppose are considered experts. Whatever, we still have tons of questions, but the pacemaker nurses have opened the door for us to ask anything anytime.

I have to share this one story about Peyton in the PCICU last night. This will show you that the Peyton we all know is still alive and well. Her first two questions after the surgery was over was "is the surgery over and can I go home now? We explained to her that she has to eat, drink, and rest well before they would let us go. And that we would have to go to a regular hospital room before we could go home. She was receiving a little extra oxygen at this time and couldn't stand the feeling of the tubes in her nose. She kept pulling them out and we were trying to explain to her that in order to get out of PCICU she needed to keep that in until her breathing was better. They tried to take it out earlier, but it was obviously too early. Her saturation levels needed to be consistently above 94 or higher to keep the oxygen tube off. When they had it off, Karen was explaining this to her (and at that time her levels were in the mid 80's). Peyton begins breathing really hard and fast trying to raise her saturation levels to 94. It was hilarious. We had the tube put back on (just blowing small amounts of oxygen to assist her) and her sat levels went up to 100. She looks at the monitor and says, "the number is 100 and that is better than 94." "Can we please take this thing off now?" The nurse overheard this and couldn't believe that a 5 year old was monitoring her own saturation levels. We could only laugh about it.

Well, I have said it a ton, but it can't be said enough. THANK YOU, THANK YOU, THANK YOU for your prayers, support and thoughts. This has been a very long ordeal and we are ready to get her home and reunite with the rest of our family. With that said, please pray for our other kids. Taylor, Anna-Kate and Noah. This has been tremendously hard on them as well and we want very badly for our family to be back together again SOON! Thank you so much to those of you who have been keeping our kids. You have been such a blessing to us and to them. We appreciate everyone and everything. Please pray that Peyton will do well and we will be out of here by tomorrow sometime. Also join us in prayer that her incision wound heals properly with no infection. Also because the pacemaker is a foreign body, there is a chance of infection resulting from bacteria that it could have. Please pray this doesn't happen. This would open the door to more complications. We are very thankful for the success now and we will be taking the other things one day at a time.

Praying For Peaceful Rest Tonight!

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6,7)

This is the first verse that we read to Peyton out of her new bible that she got the night before her last surgery. We explained to Peyton on that night that she needed to trust God and that mommy and daddy would be doing the same thing. Here we are exactly one week later and this verse will be on my mind all night tonight. The only way that Karen and I know to combat worry is to pray.

We were told today that the surgeon is contemplating going into Peyton's heart to remove the aneurysm. The cardiologist doesn't think he will, but he is thinking about it. The surgeon was not in the hospital today, so we didn't hear that from him. We should know tomorrow. That causes uneasiness in our hearts as well, because these are two totally different surgeries. One is non-open heart and one is open heart.

So as we all go to sleep tonight, we are seeking God's peace that will help comfort us and for the doctor's to make wise decisions regarding our daughter's heart and that Pey will be brave and strong once again.

God is the giver of life and He blessed us with Peyton 5 years ago and He loves her more than we do. We hate this more than anything and this is not the path we would have chosen. But as I mentioned earlier, we are not in control and we don't make the rules. This is definitely one of the most difficult things we have ever had to face. We know that there is nothing we can do, but God will do what's best and we will trust Him.

Please join us in this prayer request and thank you all for praying fervently and for all of your thoughts and concerns. I said it earlier, and I will say it again, this really helps us cope with our circumstances.

Surgery is planned!

Well, we got the official word today that Peyton's surgery has been scheduled for Wednesday afternoon. The heart surgeon came by and visited us today and shared his thoughts of how the surgery would go. He is unsure still of the placement of the pacemaker because of how small Pey's anatomy is. He was thinking on the left side just to the side of the stomach, but after speaking with one of the cardiologist they brought up the under arm location and he is considering that. There just isn't much room in her small body to place one. This is even more reason to pray that once the pacemaker is in, no infections take place and set in. We were told today, that most infections can be treated with antibiotics, but for those that can't, the pacemaker would have to be taken out and relocated so that the site could heal. Well, the problem with Pey is that there is no where to relocate.

The plan is still the same regarding the aneurysms. They are just not familiar enough with the one to do anything at this time. They want to monitor and see what happens. The doctor said today that most aneurysms are on the outside of the heart and when they burst, you really should be concerned, b/c that is blood coming out of the heart into the body. With Pey's being inside the heart (right at the center), they feel that if it burst or leaked, the blood would stay contained inside the heart. It would still make a hole (murmur) in the heart that would probably have to be repaired, but shouldn't be fatal. This is still an educated guess and doesn't make us feel very comforted. Because of the lack of information regarding this unique aneurysm it gives us lumps in our stomach's. We were hoping with the last procedure that we would be done with all of Peyton's heart issues. Even after the pacemaker is installed, there is still going to be a long road ahead and lots of monitoring from a team that is 3 hours away from where we live. Instead of being done, it seems we are just beginning again. This undoubtedly creates fear in our hearts. Karen brought up a good point tonight that with all of this, we do trust God that He knows what is best for our little girl, but at the same time, we have real feelings of worry and concern about going through all this again. Selfishly, we want her to be completely healthy and to live a normal life.

Today, was probably Pey's best day since the procedure. She had a lot of energy and did a lot more walking on her own. She was a chatter box to the nurse's and all of her company today. She also talked a lot to people on the phone. She was a trooper tonight as they had to draw blood for her upcoming surgery. She was so scared and was so worried it was going to hurt, but she went in and stayed strong. They were able to get what they needed and Pey got a pretty Barbie Doll band-aid out of it. She was mostly ready, b/c she got to perform the same procedure on a hospital doll earlier today. I have included pictures and a video showing her in action. The doll was cool, b/c she was actually able to stick a real needle into it and install an IV port. We explained to her that this was going to happen to her. This seemed to help calm her down about it.



Thanks again for all of the prayers, thoughts, and support. We hope and pray for this to be over soon so that we can get Pey home and on the road to recovery.

The latest!

Every morning the doctors make their rounds and give us the latest update regarding Peyton's status. As of this morning, there has been no change in her heart as far as getting back to normal on its own. The doctor informed us today, that Dr. Bradley (the surgeon who will put in the pacemaker and the one who did Peyton's original heart surgery 5 years ago) has cases on Monday - Wednesday, but that Tuesday seems to be the best date to add Peyton in. So, unless something changes tomorrow, it looks like Tuesday will be the day that Peyton will have a pacemaker installed. That is what we know up to this point and so we will be waiting, hoping and praying that something changes tomorrow.

In the meantime, Peyton is hanging in there like a trooper. She doesn't want to be here AT ALL and gets very frustrated about having to lay in the bed so much and have her IV port flushed everytime a new nurse comes on. She had a nurse tell her the other day that there would be no ouchies during the flushing process. After it was over and the nurse had left, Peyton says to me, "she said there would be no ouchies and she was WRONG!!!" She absolutely hates taking all of the medicine and has asked several times if she can go home now. We had another talk to with her tonight about why we are still here and if she completely understands all of this. She says she knows that surgery will fix her heart, but that she really doesn't want to do that. It is so tough because we don't want to see her do another surgery either.

We try to keep her busy with coloring, watching music videos on-line, playing in the BIG PLAY ROOM, and going downstairs with us, Karen's parents and Houston. Going downstairs has been great. The doctor gave special orders for us to be able to do that 30 minutes at a time. Today, we actually took her outside the hospital for some fresh air. She pushed a stroller around and really enjoyed being out of the hospital bed. Actually, I am really surprised that she doesn't like being here more, b/c she loves to be tickled all over her body and I bet I have tickled on average 3 hours a day. She is going to want that to continue when we get home.

Tonight was really awesome because Jon and Nikki (who was watching two of our other children) sent us a video from Anna-Kate and Noah (which is on our facebook pages) and we showed Peyton. She was so glad to see them and asked us to play it over and over several times. She really misses her brothers and sisters and so do we.

I have included a picture and as you see in it, Peyton is actually playing doctor. She runs to the hospital section of the play room every time we go in. I guess that she wants to peform on others what the doctors do to her daily. Today, her Pop-Pop showed up to see her due to a headache. She checked his head out, put a band-aid on his forehead. She filled out a prescription and told him that he could get it filled at CVS. The other day, I went in for a boo-boo on my knee and she checked my blood pressure, checked my temp, gave me a shot and put a band-aid on my finger. I never got anything done to my knee, but when I left, it felt better.

She is really doing well with all that has happened. We are still amazed at her positive outlook and her good spirits. She is really an encouragement to us and she helps us get through this very hard process.

Once again, thank you all for your help, support, and prayers. We heard about a prayer service today at Grace Church for Peyton. We can feel the prayers and we know they are helping us get through this.

Signing off for tonight as my sweet daughter is beckoning me to come and tickle her foot/leg while she falls asleep. Have a great night everyone and thanks for everything!

Peyton Update

First off, Karen and I would like to say that we are completely overwhelmed and blown away by every one's generosity and willingness to help. We hate it that we can't be home with the rest of our family and we miss our kids dearly, but it makes it somewhat easier, knowing that our kids are safe and with people who are taking great care of them (by the way, does anyone know where they are today). HA HA! Seriously though, we really do appreciate all of the help that everyone has so quickly offered. You guys are truly a blessing to our family in so many ways.

As for Peyton, things are still pretty much the same. We spoke to the doctors this morning and no changes have shown up regarding her heart. The plan is still the same and if nothing happens by sometime in the evening tomorrow, they will start making plans for surgery early next week. We are still hoping and praying that things change before tomorrow.

We spoke to Peyton's cardiologist in Greenville via phone yesterday. He called us as soon as he found out. He is an awesome christian man and had lots of words of encouragement for us yesterday. It is pretty awesome when a doctor tells you that you have the wisdom of medicine on your side but that we have something even better than that as well in God, the Great Physician. He said that he will be praying for her heart to recover as well and said that even if it didn't, God has still blessed men and women with the minds to do amazing things to keep all of us healthy and alive. No matter what direction we go, God is at the center of it all. Thank you Doc. for those encouraging words.

So we find ourselves waiting, still. We should know what direction we are going by tomorrow sometime. We appreciate all of the prayers for Peyton's health. We have been told by so many that SO many are praying. To that, our family says, THANK YOU!!!

She continues to hang in there and everyday that passes, her spunky personality comes back even more. She is starting to eat and drink a lot better and seems to be doing really well, considering the circumstances.

One other area for prayer is her two aneurysms. The doctors, at this time, have agreed to do nothing surgical about those and just watch them. It turns out that one of them is so unique and rare that no one down here knows anything about it. They are not sure if it is aggressive, dangerous, etc. They have looked in literature and can only find a few cases where it was surgically removed, so no mention of monitoring it, how fast it grows, how harmful if bursted, etc. The other thing regarding the aneurysms is that it will require them to stop her heart for the surgery and put her on a heart/lung bypass machine. This is potentially more dangerous to her than just monitoring it. This is not a comforting answer, but as we have learned with Peyton, we have to trust this medical team and God with her life. Karen and I know that we are never in control of life, but when we come here, that is made even more real to us. I mention this, because we would love for you guys to pray for this and that more information will be gained so that our little girl has the best prognosis and a decision can be made with more certainty. Right now it seems to be an educated guess.

Peyton's older sister, Taylor came down to see her yesterday and that really made Peyton happy. They played doctor together in the BIG play room here at the hospital and she was really sad to see Taylor go. Her little brother, Houston showed back up yesterday and is down here staying with Karen's parents. She really enjoys seeing him as well but gets frustrated (in her words) when he tries to pull on her monitoring cords. All in all, she is really doing OK. The doctors said that even though there are some developmental issues with her heart, the heart is in really good shape and that is why even with a heart block, she is still doing well. She seems to be short of breath sometimes and tires out easily, but that is the extent. If her heart comes back to normal or the pacemaker gets installed, she will perk up even more.

Once again, we are so thankful for all of you. Even though Karen and I haven't responded to every comment, post, etc., we do see them and we do appreciate the words of encouragement. There have been so many people that we don't even know open up there house to us here in Charleston, offer to buy us hotel rooms, etc. As I said before, we are blown away.

We are still holding to our hope and we are praying for a miracle for her heart. No matter what happens, though, we trust in God and His plan for her life and for ours. He truly knows best. A song came to mind this morning as I was seeking encouragement from God's word and some of the words are:

All who sail the sea of faith
Find out before too long
How quickly blue skies can grow dark
And gentle winds grow strong
Suddenly fear is like white water
Pounding on the soul
Still we sail on knowing
That our Lord is in control

Sometimes He calms the storm
With a whispered peace be still
He can settle any sea
But it doesn't mean He will
Sometimes He holds us close
And lets the wind and waves go wild
Sometimes He calms the storm
And other times he calms His child.

I know that God knows what He is doing with our precious angel. We are not doubting God at this time, rather we are running to Him. We don't understand why this is happening and maybe we never will, but we will continue to trust in Him. We know He can intervene into any situation, which is why we pray for the miracle in Peyton's heart. But, we also know that He may not and we will still rest comfortably in Him through the pain. One of God's many signs of His involvement in Peyton's situation is you guys. The words, the prayers, etc help us get through this. Again, we say THANK YOU!

Peyton

Well, I haven't updated this blog lately and trust me, this is not how I wanted to do it. I figure this is an easy way to share what is going on and get news out about Peyton.

We are sitting here in a regular hospital room with her as I type. No ventilator, no catheters, just a sweet and precious little girl sleeping. As some of you know this is like Deja Vu for us all over again. 5 years ago, this is how Peyton's life started out. At about 5 days old, she was flown to Charleston for what turned out to be 2 straight months of stay in the hospital. What was supposed to be an outpatient surgery on Wednesday has turned into our worst nightmare and has landed us back in Charleston for an indefinate amount of time. As most have read on facebook, due to an accident during Peyton's heart catheter procedure, a good piece of tissue was burned that has now caused a complete heart block.

I will save all of the other details, b/c I know that you have read bits and pieces as the days have progressed. Suffice it to say, this is a pretty serious issue that can't go unresolved. The doctor's are pretty much saying that it will take a miracle to get Peyton's heart back to normal. They feel certain that it will not regain normal usage. We obviously believe otherwise and are praying for that miracle. Should this not be a part of God's plan, then a surgical procedure will be needed to implant a pacemaker into Peyton's body. This will mean that Petyon will have to be cut open again and the surgery will be alot like how her open heart surgery was except, they won't be working inside the heart. Due to all of her stomach surgeries, the heart surgeon is not certain that he can place it above her stomach. Her anatomy is too small for it to go where it would go in a larger child or adult, so this means a possible placement under her left arm pit. We will not know the answers to these questions until later in the week.

If there is any positive news in all of this, it would be the fact that the doctors found two annuerysms in Petyon's heart that we had no clue existed. This is a blessing in the sense that we are aware of them and can monitor them as needed. One of the anneurysms is common and the doctor's do not seem to worried about it. The other one is rare or unique and according to the team who met to discuss Peyton's status, no one knew anything about it. They have heard of it and know it by name, but that is it. They have decided to just monitor this to check its growth and so on. During that time, they will be researching it and seeking advice from others to determine any potential danger that may exist. If any is found, then a plan will ensue to eliminate this anneurysm. Not even going to think about that right now.

This little girl has been through the ringer. I told her today (with tears in my eyes) that she was my hero. I told her that she is the bravest and toughest girl that I know. She asked me why I was crying and I told her because I wish I could switch places with her. She simply sat up (which is not easy for her) and hugged me. What is wrong with this picture? Shouldn't I be comforting her? See what I mean. She is tough as nails.

So what is different this time around vs. five years ago? This time, it is much harder. When Peyton was a baby, she had no idea what was going on. She couldn't understand or comprehend anything. This time, she can. It is so much harder as a parent to have to explain to your baby girl what is going on and that another surgery is possibly in her future. I told her that today and she said she didn't want to have the surgery. I told her that we had to do whatever it took to get her back home and healthy. She said she knows that and that she will be brave for the next surgery. Once again, I wish we could trade places.

One thing is for sure. 5 years ago, God pulled her through some really bad health issues. He loves this little girl, he is perfect and he makes no mistakes. No matter what happens, I rest in that fact. She is aware of this as well. She has talked a lot about God lately and the first thing she wanted today when she was feeling better was her bible. So encouraging!

Karen and I want to think all of you for your willingness to help. So many of you have jumped in to help with meals for our kids, babysitting and sleeping arrangements for our kids, some have made trips down here and even mowed my lawn. Words can't even began to describe how appreciative we are for all of this. We have told Peyton all about your generosity and that so many people are praying for her. She is thankfull as well.