Praising the Lord and joining in Friday's Fav. Pic

I'm rejoicing with so many families tonight in the work the Lord has done in so many of our Team Brave Heart families and friends. God is good and has been so evident in the miracles that have taken place the past few weeks.

First I'll start with my own precious Brave Heart and say that after a much needed vacation Evan started back to pre-school on Monday and although he cried when being dropped off they called and said he was having a wonderful day and then Wed. he ran in and waved bye to me and said, "Mommy, I won't cry today, Bye." Let's pray this continues but I'll give praises for this week.

Logan as I stated before, just shy of two weeks from having his Fontan is home and doing well.

Sarah has been given a few more months to grow before having her second open heart for HLHS. Sarah is our newest member and a gorgeous little girl.

Logan's mommy sent out an urgent message for prayer the day after Logan's Fontan and it was for a fellow HLHS buddy, Maddie. I have never met Maddie or her family but any friend of Logan's mommy is a friend of mine and anyone sending out plea's for prayer for their heart kid is definately got my attention. I began reading Maddie's blog and crying and praying for this family and felt compelled to start updating here, trying to reach as many of you as I can to pray for Maddie. As of last night, she had defeated all odds and came off ECMO and

was holding her own. Praise God!

I'm joining the bandwagon with favorite picture Friday. This is one from our vacation and it really is a true picture of Evan - my little beach bum.

Prayers for Maddie and Answered Prayers for Logan & Sarah

From Logan's Mommy this morning:
All things are possible with God!!Logan is going home today!
Just shy of 2 weeks from Logan's Fontan & he is going home.

Our youngest Brave Heart member, Sarah, who has HLHS had a cath. yesterday with a Stent placed in her atrial septum. She was released this morning with Dr.'s saying this has given them some time to put surgery off until Dec.

Maddie's webpage says that she has been put on CPS - a petite version of ECMO. She is going to have to be opened back up and have her right lung repaired. The surgery is impossible while on CPS so, the Dr.'s are going to move the breathing tube into her good lung and if she can support herself they will beging weaning her from the vent. today. She also is having some kidney issues. The last sentence from their post yesterday says exactly what the family needs from us, Prayer.:

We are getting close to desperation. Please pray for a supernaturally strong left lung and for functioning kidneys. Maddie is alert and aware and wants to live. Please Lord hear our cries, in Jesus. Amen.

Prayer for Logan, Maddie & Sarah

From Logan's Mommy:


Logan is doing well. He has had a pneumothorax for the past 2 days, caused by the air leak. Today they decided they would have to put in another chest tube. They converted the room into a mini OR. After several attempts, they came out and said the procedure went well, but apparently sometime between 11a and 2p the lung came back up. So no extra chest tube for now. We still have the air leak, so the pneumo could reoccur @ any time, we are hoping the leak will seal off soon. Aside from that, they are pleased w/his progress. Although frustrated, we are extremely thankful that we aren't dealing w/worse.


Sarah is one of our newest members and has HLHS because of lowering sats her Dr.'s bumped up her cath. which she is having today.


Sweet Sarah


Maddie's parents are updated her webpage daily - see link to the right. It seems they will be trying to come off ECMO tomorrow.

Please continue to pray for our "Brave Heart" family and their heart friends.

For some reason Slide.com is not giving an option to post to blogger anymore so here is the link to our slideshow from vacation. Enjoy!

http://www.slide.com/r/BkPyV_DK1D8NFxdeftvtQHgXSAoc96sM?view=large

Update on Logan

We returned from our vacation this morning around 1:00am and I'm sitting at work - I'm sure looking like a zombie. We had a wonderful time and 6 days went by way to fast. I'll post a slide show tonight when I get back home.

Logan is in step down and doing well however one of his close friends Maddie needs our prayers. These are the updates I have received from Logan's Mommy.
Maddie's website:
http://www.madelinelester.com/Current/Current.htm


Last Sunday 9/16:
Be joyful in hope, patient in affliction, faithful in prayer-Romans 12:12
The past few days have been difficult for Logan. The good news is his new cardiopulmonary circuit is doing well. We extubated quickly on Thursday, weaned off drips on Friday, and rested rather comfortably. Saturday they removed his intracardiac lines, pacer wires, and transitioned from Heparin to Lovenox & Coumadin (blood thinners). They also stopped his Fentanyl(pain med) drip. He suddenly began vomiting that has lasted into today. He is also having excruciating belly pain. They have yet to determine the cause, 2 belly films and a CT later. They initially suspected he was constipated, then possibly kidney stones. All of these have been ruled out, the CT showed fluid in the abdomen. It could be gas, they really don't know. The plan is to see how he does overnight and repeat a CT tomorrow w/ contrast if this doesn't resolve. He also lost both I.V's, and arterial line. They replaced both I.V's ,and opted to forgo the arterial line. The negative side of that means he will require numerous sticks for blood draws. He became dehydrated with all the vomiting, so he's back on his I.V fluids.He is on clear liquids but is still not tolerating them. He is also receiving breathing treatments, to help break up some of the chest congestion. I was able to hold him yesterday, but due to the vomiting and belly pain he couldn't get comfortable. He has held his arms out for me to hold him today, but everytime we move him he begins heaving. I hope this resolves quickly because both of us are in need of a little snuggle time. Brother and Sister have visited the past 2 days. They take turns holding Logan's hands. ! Prayer of the Night-Please ask God to guide the dr's to find a cause & solution for Logan's vomiting.God Bless

Monday 9/17:
Our dear sweet Madeline needs your prayers! As most of you know, she underwent the Fontan 9 weeks ago. Over the weekend she developed an aggressive bacterial infection. With her immune system severely compromised she was unable to fight this. She was placed on the heart/hung bypass machine(ECMO). Because of the infection, she is not a candidate for a transplant. Please pray for a miracle for she and her family.I have attached Dave's emergency prayer request. Please forward to your family & friends!
The bacterial infection almost took our Maddie away from us last night. To the point, she is now on a heart-lung bypass machine, which can keep her alive for about ten days. We are currently holed up in a room next to hers in the ICU waiting for any news. I cannot provide a picture sad enough to express our sorrow and fear at this moment. Please pray for a miracle, that god would spare her life. We can’t believe this is happening.

Wednesday 9/19:
Because you are precious to me, and because I love you and give you honor, do not be afraid I am with you.-Psalms 43
The surgeon and cardiologist are both pleased and cautious of Logan's progress. We were transferred out of the PICU on Monday afternoon. This was met w/mixed emotions. Happy because we are one step closer to home, and sad because we trust our PICU nurses above all others. Logan is no longer vomiting & wretching. He also finally pooped which seemed to be the cause of his belly pain. Your prayers and a dulcolax suppository did the trick. Unfortunately he still has a chest tube leak. The surgeon feels this will eventually seal on its own.They attempted to take him of suction for 2 hours today, a chest x-ray revealed it was too soon. What this means is, until the leak seals, we can't go home. His biggest source of discomfort right now is his incision & chest tube sites are itching. We finally received an order for IV Benadryl around midnight, but this gave him little relief. He may have slept a total of 2 hours. Neither one of us are fond of daily 4am wagon rides for a chest x-ray, followed by labs & Lovenox injections. Then, by the time you fall asleep, its time for rounds. My heart received a hug yesterday when he gave me a BIG smile. This was the first since before surgery. Praise God for the little things. We continue to be frightened for Madeline and her family, please add she and her family to your prayers. Logan's evening prayer request: 1. The itching to stop 2.The leak to seal. 3. Sleep, Sleep, and More sleep. God Bless!

So if your reading please pray for Madeline and Logan.

Love for Logan

This is the message I got from Logan's Mommy last night:
Friends & Family, as most of you know Logan underwent his 3rd Open Heart Surgery ( The Fontan) today. Logan came back from surgery around 4pm. He came back with 3 chest tubes, many drips, and on the ventilator. The 1st 2hrs were a little rocky , in typical Logan style. A repeat Echo calmed our fears. He was extubated(breathing tube pulled) around 7 pm. He reminded everyone that he's the boss, by holding his breath and passing out, but with a little O2 he recovered on his own. Prayer of the Day-Comfort , and Coughing for Logan !! Praise God for the incredible Dr.'s, OR & PICU staff!!God Bless.

School and tears

Okay - yesterday I meant to post a link to a wonderful commemorative piece they played on the local radio in honor of 9/11 - you have to listen to this - I haven't heard anything like it:

http://www.brocksgifts.com/silentnight911.html

I feel horrible I haven't updated but I'll post later why. Alyssa is doing wonderful and I saw her myself last Friday walking and smiling - doing just great.

Our other little Brave Heart, Logan, is having his surgery tomorrow - the Fontan. Logan and his family are a testimony to me and Team Brave Hearts are praying today during pre-op and will be contunuing in prayer until Logan is home and on the mend. I'll post and let everyone know how this strong and beautiful little boy is doing.

On the home front we have been insanely busy - we put our house on the market and began looking for a new home closer to our parents and to Evan's school. Know anyone that wants to move to KY???

We are also going on vacation with our whole family to Myrtle Beach and we are really looking forward to some time with them and away from work.

Evan started pre-school a couple of weeks ago and honestly I don't know if we are going to continue. He is having such a hard time - originally he did okay - cried during naptime - but for someone that had always either been with me or my Mom I thought that was pretty good. It has continually gotten worse. On Monday when Mom picked him up she called me and said he had black circles around his eyes and said that he cried most of the day. The teacher said it was for no reason and that one of the kids caused him a baby and he continued to cry. That is NOT like Evan - I figured I would be getting calls from school saying because of Evan's "rough and rowdy" nature he had pushed someone or something on that nature NOT that he has been crying all day. This is SO hard. I thought this was going to be such a good thing, we had researched and found a school close to my Mom - Christian - small - loving. I really do like the school, I'm just amazed that it seems Evan does not. Monday I had a long talk with him about why he is crying and all he ever says is that "Mommy I missed you and I needed you." He never tells me anything else. So, today I decided not to make a big deal about it just say - "Good Morning Evan - lets get ready for school." We did our morning routine and got in the car and headed to school - about half way there I looked in the mirror and Evan's bottom lip was quivering and I asked if he way okay, the tears started rolling and he said, "Mommy, I'm trying to be real strong but, I can't, I miss you too much." AHHHHHHHHHH - then my tears started and believe me that this morning was really, really hard. I hated leaving him crying - in fact I almost didn't - I called my Mom and asked her to pick him up before naptime and promised him Mamaw would be there soon. The teacher called me about a half hour later and said that she asked him to help her glue some stuff and he cheered up after a while - we'll see. Any advice???

Continue to Pray

A few of Team Brave Heart Mama's, including myself, went and visited Alyssa's family last night. Alyssa was very uncomfortable and having some blood pressure issues so we visited with her Mama a few seconds to let her know we are praying.
This is the update from this morning:
"Alyssa has had a few set backs in the last 12 hours or so. Her GI system is having a tough time getting started again and causing her considerable pain. She has been screaming a lot with very little sleep and it has been really difficult for Mom and Dad. They still aren't allowed to hold her yet and are having a really hard time comforting her. The doctors have re-inserted a tube to clear out her stomach and have restarted her IV blood pressure medicine. They have increased her pain medication and gave her a sedative last night. She finally was able to get a couple of hours of rest. "

Updates

I'm getting ready to go visit Alyssa's family myself but I did receive a message from another team member:
Yesterday afternoon-
"She had closed heart surgery (went through her side) and was not on the heart-lung by-pass machine. She was off the vent before her parents saw her in the PICU! Alyssa is recovering quickly....keep the prayers coming."
This morning-
"Let me start by saying Alyssa is the most amazing little girl I have ever known. Just hours after surgery the doctors had Alyssa sitting up in bed and talking. She was saying "all done" but I'm sure those words were music to her parents ears! Alyssa had a little rasp when breathing so the doctors did a chest x-ray and it came out clear. They did a breathing treatment this morning and hopefully this will clear up her lungs and airway. The doctors also took Alyssa off her Oxygen tube and started changing her Blood Pressure medicine. They want to try to give Alyssa some liquids today to see how her digestive system reacts."
I'll update more tomorrow.

Please Pray

I know the walk was very emotional for all of our families but, especially for Alyssa and Logan's. Alyssa is undergoing her first open heart surgery as I type in the wonderful hands of the nurses and Dr.'s at Kosair Childrens Hopsital. Alyssa's Mommy and Daddy were so strong and came yesterday to walk in Alyssa's honor. We are praying for you Alyssa.

Also, Logan's family was in attendence - Logan is a HLHS survivor as will be undergoing his Fontan in just 2 short weeks.

Heart Walk After Party 2007

Thanks to Shanna & Dan for opening your homes to the Team Brave Hearts crew for an after party. As you can see from the pictures, we had a blast. It was beautiful to sit back and see these children who have overcome and are still overcoming so many obstacles in their little lives to just be able to be kids and have fun - it brought tears to my eyes.

Kentuckiana Heart Walk 2007

The Walk was amazing!!! We have alway's been included in the Louisville Friends & Family team's and on Fri. night the president of AHA called and said that because of how much work we had done, we were going to be recognized as a company team and had our own spot at the beginning as a top walker team!!! Usually company teams are ranked and then Friends & Family teams are ranked - weren't we surprised to be the #1 Friends & Family team and the #5 Company team (out of some major corporations) raising an amazing $20,000.00 - WOW! Goes to show that everyone can make a difference - we started out as 3 families and have grown to 16. We were also asked to go live on the news with Angie Glotzbach (a heart survivor herself) on WAVE3 Louisville and quoted in the Courier Journal http://www.courier-journal.com/apps/pbcs.dll/article?AID=2007708260624 - getting awesome opportunities to raise awareness in so many ways.

Team Brave Hearts Kentuckiana AHA Heartwalk 2007

All of you that keep up with Evan's blog have been touched by CHD's in some way, either by Evan or your own child so, I wanted to post a link to his donation page for the American Heart Association's Kentuckiana 2007 Heartwalk. This is our 3rd walk and we will be walking again this year with other CHD families under "Team Brave Hearts". Our main goal in participating in this walk is to raise awareness of CHD's and funds for much needed research. If anyone would like to donate, his personal donation page link is: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=215841&lis=1&kntae215841=07A614B828344CA5959CA8FE623F5775&supId=136764053

1st Day of Pre-School

Camping Trip

T-Ball

Pictures

This has been such a week. We went camping on Nolin Lake for the weekend and had a blast with Eric's brother and sister in law. We came home Sun. and got things ready for Evan's first day of pre-school. Evan told me his belly hurt before bedtime and woke up about 10:30 and started vomiting and continued every hour for the rest of the night and started with the poo's Mon. morning so he missed his first day of school. I did about 10 loads of laundry Mon. and took Evan to the Dr. to confirm he had a 24 hr. virus. We rested most of Tue. and Evan's yuckiness stopped but he started running a 101.6 fever which also went away later on Tue. Evan's Dr. said as long as his yuckiness stopped and his fever was gone that he wasn't contagious so Evan got to start school on Wed. but, I'm not sure that was the best idea. They said he had lots of fun, was well behaved and a good helper but that at naptime he said his belly hurt and that he needed his Mommy to tell her he loved her, awwwhhhh. My Mom picked him up from school and they said he had been crying - she said he was pitiful. We had bank night for the heart walk on Sat. last night and last I heard we were less than $2000.00 away from out $20,000.00 goal - GO TEAM BRAVE HEARTS!!! We woke up this morning to hear there was a horrible accident on I-65 and that we would need to take alternate routes into town - turned our usual 1/2 hr. drive to 1 1/2 hrs. and then about a mile from my Mom's Evan said he needed to go to the potty and didn't make it. I walk into my Mom's and she is on the couch sick - ARGH - I can't handle much more of this. I'm at work just to catch up for an hour or two and then going to get him to go back home. Enjoy our summer and school pic's.

Brave Hearts Golf Scramble 2007

All I can say about Team Brave Hearts Golf Scramble 2007 for AHA is - WOW. We had a wonderful turnout of 80+ golfers despite the heat and raised over $5000.00 for the American Heart Association. It was a lot of work but so rewarding and our team is growing by leaps and bounds - we are a force to be reckoned with here in Kentuckiana. I'm amazed and blessed by the support we have received from our families, friends and our community. The walk is in two weeks. We also have a movie that was played during the scramble inside the clubhouse that got a lot of recognition from our local AHA president and I'll be posting it soon so, come back and prepared to be touched.

August = Busy

We have been having lots of fun and staying insanely busy. Evan started Wee T-Ball back in June with 3 of his best friends. They are so cute and it's been wonderful spending time with our friends every Saturday watching our boy's act crazy together on the field. This has really thrown me for a loop however since I work full-time and Saturday was my cleaning day and then Sunday was family/church day - now we are gone most of the day Saturday b/c after the game of course everyone has to go have lunch and then it's nap time. My house show's that we have been busy this summer - it makes Sunday such a busy day but, I wouldn't trade this time for anything - not even a clean house. Work has been busy as well - 2nd Qtr. presentations and meetings - it's our 100 year anniversary and we have been doing lots of fun stuff to celebrate. Eric has been working 70 hour weeks on top of all of this, making me feel sometimes like a single mom. I hate it for him, feel like he is missing so much and feeling a little overwhelmed myself but, this should pass soon - he is in heating/air and this is their busiest season. August does not slow down for us - AHA Dance Benefit, AHA Golf Scramble, AHA Heart Walk, camping trip, Evan starts pre-school & ending with a much needed Myrtle Beach vacation. Blogger is being mean and won't let me download my slide show so I'll leave you with a few pic's and try again later.

Some New Pic's

Nothing much going on here. We are have had our first meeting and kickoff party for the 2007 Kentuckiana Heart Walk. I'm so excited and need to get to work - the walk is going to be a whole month sooner than it usually is - so I have less time than I think. Here are some pictures from our meeting and unsuccessful group picture - boy, were the kids not having it that day. Also some pic's from the AHA kickoff at the Louisville Zoo.

Team Brave Hearts 2007

Lucas, Evan, Caleb,

Benjamin, Alyssa and Logan

Look at Evan, Caleb and Logan - they are fed up.

So we tried the cute sliding board group picture

this group picture was just not happening -

you can tell from a previous post that our golf scramble flyer ended up being done with a collage of individual pictures - LOL.

Friends for Life!!! Guests of Honor at the AHA 2007 Kentuckiana Heart Walk Zoo kickoff party.

Having lots of fun at the zoo.