Our First Week Back At Home...

This last week at home has been wonderful. So many people have wondered if I have cabin-fever or if Bear is tired of being inside so much. The answer to both questions surprisingly is, "no." He has not felt like it nor has he asked to go a lot of places. As long as he gets to eat his queso, chips, and quesadilla he is very happy. For those of you who don't know, Bear could live on Mexican food alone. We are still watching him closely to see if his blood count is going to come up on it's own or if he will need iron. He is very pale and doesn't run around all day but he is doing amazingly well. The biggest change that we've seen with the increased level of oxygen to his brain is his temperament. By nature he is a true first born but in the last few years we had seen behavior and actions that we knew didn't make sense. Now on this side of things and being told how deprived his brain and body had been of oxygen it makes much more sense. He has been calm, pleasant, and kind. 

His body is in constant motion and he is taking cues from his body for the first time on sleep. All week he has told us he needs a nap and he can tell how much better he is with sleep. It really is amazing. On Monday his tape came off his incision and he was sad that it is bigger than his other "zipper." I told him how good it looked at only 3 weeks and every week it would look even better. He also asked me if his heart would every sound the same. He said, "It's too quiet...I don't hear my washing machine anymore." 

I don't think we will ever begin to understand that he heard his heart beating constantly and that it affected everything he did and competed with and for his thoughts. To an adult that would be maddening but to a child I can't even imagine. It's good that we didn't know all this and God is HIS perfection took care of Bear as he waited and got old enough to have this surgery. Every step has had God's hands on it and it makes Alfred and I so grateful that we are not in charge and that Bear is HIS child. 

Brock has been his usual funny and charming self. Barrett has been patiently teaching him how to play the PS3 which is hilarious. He is going to VBS this week and to our amazement Bear hasn't complained about not going. He says, "I have to protect my heart from my friends right now." I've had to limit the video games at home or else all THREE of my boys would be on it 24/7! It has been nice having my monkeys love on each other and enjoy being brothers. 

My Mom went home yesterday after 23 days with us. She was an amazing help and is my best friend. The boys were so sad to see her go and all day they've asked when they could go to NeeNay and Poppa's house in Tennessee. This has been a wonderful week to see the light at the end of this five-year tunnel. We are looking forward to having many years of NO surgeries, NO heart caths, and LOTS of happy heart-health! 

HOME...

As I write this, Bear is tucked snug in his bed and I am sitting so blissful that we are HOME! It has been a very LONG 16 days yet it seems we left for Houston only yesterday. We had our final visit to Texas Children's this morning and it was VERY eventful. Alfred and I told Bear that his "strings" would be untied and he would have a chest x-ray. That seemed to sit well with him until the nurse told him she was ready. Then the fear of the last two weeks and ALL that had taken place at the hospital set in. That sweet baby cried and begged to go home. We stifled a laugh as he said, "One...just one more minute. I NEED a minute!" The nurse removed the first chest tube suture and it hurt. The next three, unfortunately, had to be removed by force but after he kept saying, "It's ALL over...it's really ALL over." He has been such a trooper and as difficult as it is to process all of this he has done so beautifully. He has a perfectly functioning bovine valve and his body and brain are receiving more oxygenated blood than EVER in his life. He is a bit jittery getting used to all the good blood in his brain but he will become accustomed to it soon enough. 

So...now, we are at home and the next few weeks we will try to remind him to not flip off the furniture or run up the stairs. We will say so often to not wrestle with Brock or jump off his bed. This is very normal 5 year old behavior, however, not so good for a healing sternum! We continue to thank Jesus for Bear's special heart and the team at TCH in Houston that performed such an incredible job. One of the things we have been talking about with Bear is why SO many people have been praying for him and why this was such a special time in the life of our family. At times he has asked us why this was happening to him and why he would not be able to swim and run for awhile. This has and continues to be an incredible way for us to share God's unique formation of each of us to Barrett. 

Think about this...God made Barrett's heart. Then he made an animal that HE knew would have a perfectly compatible valve and gave man the knowledge and wisdom to perform HIS medical miracle! It is truly incredible to serve and worship a God that thinks that much of HIS creation!

Catching Up...

It has been several days since I blogged. We do not have Internet access and this is from my phone. Crazy how we can use technology. The last 3 days have been very special and so different from what we invisioned. Bear is progressing beautifully. His chest looks so good and his chest tube sites are healing well. He needs only a little pain medication along with the 2 other medications he's taking. He is in such a good mood and is happy; even when he is hurting a little or itching from the rash that the pain medication gives him.

Brock wants to "see" Barrett's chest each day when I "paint" it. He had asked several times why Bear has a broken heart and he doesn't. That has made for some interesting conversations about God's plan and how we each have a purpose in his plan. Brock loves his brother so much. He is happy to see Barrett is okay and he is working very hard to be gentle. He pats Barrett's arm and Bear quickly tells him "You can't hug me- don't forget." Brock has been our comic relief and we continue to laugh at his precious daily antics!

I am so grateful my Mom is here. Her teacher mode is on full gear and even as I write this she is working on sight words with Bear. She is cherishing this time and is making the most of being with them and helping me. We have been so encouraged by your prayers, comments, and phone calls. The path for Bear is so exciting for Alfred and I to see unfolding. We are humbled God chose us to be his parents and what an honor it is to be his Mommy!

Sunday...

Words cannot describe how happy we are to be out of the hospital and all sleeping in the same place. Brock arrived late yesterday and the brothers were eager to share everything that they'd done the last week. Brock was gentle with Bear and ask why he had such a big "boo-boo" on his chest. Brock stayed last night and will stay tonight with my parents in the hotel and then my Dad flies back to Memphis tomorrow. My Mom is staying through much of June to help me. 

Thank Jesus for that, too! 

Last night Bear was so sweet calling out my name in the darkness asking why it hurt so much. He would change how he was positioned in his bed and look at me and say, "I'm okay now." We have pain medication to give him but the Tordall is now out of his system and he is aware of everything in his chest. Pray he can rest tonight and we can comfort him as needed. The video games are a G-R-E-A-T distraction for Bear and Alfred :) I am glad God gave our Bear the disposition to handle this far beyond his 5 1/2 years. It's truly incredible.  

Leaving Texas Children's...

The 3 of us are quietly sitting here in Bear's hospital room. I am blogging and Alfred and Barrett are watching Handy Manny. Bear just said he was glad his heart was doing "good" because he was ready for our family to be all back together. Alfred and I couldn't agree more. It is hard to believe he had open heart surgery less than 3 days ago and we are sitting here waiting for discharge papers. The doctor that saw him yesterday said he was "remarkable" and that Texas Children's Hospital was one of 2 hospitals in the country with the team that could pull off something like this. I think the phrase she used was "We are a tight team." I totally agree. His care from beginning to this moment has been stellar. But with all the credit I give to TCH I know that Jesus Christ heard the prayers of his people for our Bear. We have lots of follow-up appointments and weeks of mending and healing but what a God we serve! Please continue to pray and remember Barrett, he is going to be very sore as his sternum heals and his body gets back to normal. Pray his pain is minimal. We will be in Houston through June 8 and then returning to see our doctors in Austin.  

We are so blessed to be loved by so many dear family members and friends.

 This has been a beautiful expression of God's grace in the life of our family. 

What an incredible story our Bear will have! 

Brave little Bear...

Today has been ONE amazing day! 

Bear has been up and at 'em nearly all day! The morning began early with his Chest Tube being removed. Shortly after that they said it would be good for him to get up and take a walk. Well, there was NO stopping him. Nee Nay and Poppa were headed to the hospital and so Bear wanted to go meet them downstairs to surprise them. Dad went home to shower and rest so down the hall, around the corner, down 15 floors and to the front door, Mom, "Aunt Holly", and Bear went. They were SOOOO excited to see him up and walking. We got back to the room and he decided he wasn't finished with his adventure. He decided to "drive" a car down to the 3rd floor Food Court for lunch. Of course, he wanted the infamous Chick-Fil-A. After lunch he continued his adventure with Dad, Poppa, and Nee Nay and went on a wagon ride to check out the coolest Train ever down on the 1st floor. 

Here are some PRAISES that have taken place today:

*his chest tube was removed

*his chest x-ray this morning was "excellent"

*they continue to say that he is doing "remarkably well."

*he had an echo-gram

*he had an EKG test

*he's felt like eating/drinking

*slow removal of heavy pain meds

*sponge bath; new pajamas

*he's happy and smiling

We will be posting pictures of Bear's adventurous day around Texas Children's! 

This is ONE amazing place...

God is SOOOOO good! 

Power of Praying Friends...

My first-born baby is gift from God in so many ways. He is a testimony to Jesus Christ and will have a story that is one-of-a-kind. There is no explanation for the way Bear is healing other than our God.  At 6:00 p.m. last night Bear decided he wanted to get up and “walk” to the couch. That was great for several reasons. His chest tubes drain when he is sitting upright which means a speedier recovery and he is able to control something (being in a bed with tubes and IV leaves little for him to controlJ). The cardiologist came in at 7:00 p.m. and visited with Bear. She was very impressed with his recovery and said he was “remarkable”. Very good description of Jesus, don’t you think?

 Today we have a chest x-ray and they will monitor if his chest tubes can be removed. If they do remove his two chest tubes then it is very possible they will release Bear on Sunday to our living quarters in Houston. The cardiologist said that he needs to be sitting up quite a bit and going to the bathroom. He also needs to be off all pain meds and only needing Tylenol. Thankfulness fills my heart as well as relief. Seeing my baby in pain is so difficult. As a mother I want to take it all away but I know it is temporal and the outcome far outweighs the discomfort.  I am in awe at the last 24 hours but I guess I shouldn’t be...that’s just our God and that’s just my Bear!!

Room 1508

Bear now has an identity! Well...he has a room! The medical staff has successfully moved Bear into his own private room from the CVICU and he is resting well. His temperature is normal and they have now removed the arterior line from his neck. Please continue to pray for REST and COMFORT. Everything is sounding and looking better than to be expected! There are lots of smiles on our faces as the doctors and nursing staff continue to share Bear's progress with us. 

"Children are a GIFT from the Lord..." Psalm 127

Brave Bear...

Bear had a GREAT night! He is doing well this morning. He wants to have "everyone" in his room with him and Maranatha keeps reminding him that only two can come back at a time. He is awake and alert. This morning he woke up asking for a Kolache. Before surgery we surprised him with a dozen of his favorite from the Czech Stop in West, Texas. 

Maranatha came in hand with one this morning and he did take a few bites. 

Some things to pray for:

*his hydration; he's extremely thirsty

*his pain level; they are trying to manage it

*his blood pressure is high (normal)

*his temperature is high (101)

*he's uncomfortable

*they will begin removing some of his IV's and lines today

*he will be moved to a regular room sometime today

*he can begin eating 

*breathing "real air" without oxygen

Earlier he wanted to move and lay on his side so the nurse decided to proceed in removing Bear's central line. He was SOOOO brave! The tape coming off was worse than the line coming out. Please continue to pray for the healing of his sternum. They had to break it (typical for surgery) in order to perform the heart surgery and it will take 6-8 weeks to heal. His little spirit is good and God is remaining to be his comforter. 

"I will fight for Barrett says the Lord; He needs only to be still..." Exodus 14:14

OH...what a day!

Sometimes I wonder how I am worthy of the extravagant dimensions of God’s LOVE...to know it and believe it is one thing…to comprehend it and experience it is something out of this world. It all began this morning with us piling in the van for the short drive from the hotel to TCH. LOVE was abounding in EVERY sense of the word. As we took the elevator to the 17^th floor and checked Bear in LOVE was in the smiles of people we walked by whether it was sick children, concerned families, or hospital staff. LOVE was in the form of a “friend” for Bear while we were anxiously waiting in the waiting room. LOVE was seen as hugs were given out with familiar faces coming to pray, show support, and visit as we patiently waited. LOVE was given by Bear to everyone as he walked like a “big boy” back to surgery. LOVE was shared with the Thompson family as their sweet, precious little Tori underwent her 3^rd successful heart surgery today all before her 5^th birthday. LOVE was displayed by Dr. Frasier, his team, and the medical staff in the excellent care of Bear. LOVE was tears rolling down our faces as we saw this MIRACLE baby laying in a bed with wires, tubes and monitors attached to him. LOVE was embraced as Bear held his “lovie” in deep sleep. LOVE was a kiss on his cheek as I stood over his bed PRAISING a God who LOVES us enough to die for us, LOVES us enough to care for us, LOVES Bear so much to have an amazing plan for him, and LOVES Bear enough to place HIS touch on Bear’s life! Today was the day I was able to see LOVE abound, embraced, and displayed for ALL to see and GOD received the GLORY in it all…for it is not true LOVE without it being sent straight from HIM! 

 "Aunt Holly" 

 “And may YOU have the power to understand, as ALL God’s people should, how WIDE, how LONG, how HIGH, and how DEEP HIS love is.” Ephesians 3:18

**Short Update- Please pray for complete rest and refreshment for the family. We will begin taking shifts tomorrow with Bear in the CVICU (Cardio Vascular ICU). He will begin to come out of sedation during the day but will most likely remain in the CVICU tomorrow. We will update as we see how he is and how things are in the morning.**

GOD news....

"WE will PRAISE you FOREVER for what you have done; in your name WE will hope, for your name is good. WE will PRAISE you in the presence of YOU!" Psalm 52:9

Alfred and Maranatha just returned from meeting with Dr. Frasier. 

The "zipper" is being sewed up and everything is GREAT!  The update is below:

*Only on bypass for 50 minutes

*Did not have to stop his heart 

*Trimmed away the muscle of the right ventricle b/c it was enlarged

*Able to put in a small adult conduit (18 millimeter)

*Attempting to take the breathing tube out now

*MAY be in PICU only one night

*For a Truncus child, Bear looks "very good"

*Arteries have developed well

*Didn't have to have a blood transfusion

*Doesn't anticipate that he'll have to have a transfusion at all

*Possibly get to see him within the next hour

*Prayerfully he will be in a regular room in 24 hours

PRAISE Jesus from whom ALL blessings flow!

Please pray tonight that WHEN Bear wakes up that he is not fearful or scared but rather at peace and calm. Another update to come soon! 

Waiting...

We have not received our 5:00 update...

"Don't worry about anything; instead pray about EVERYTHING. Tell God what you need and thank him for ALL he has done..." Philippians 4:6

1st Update

Dr. Frasier is now scrubbing in and they have Bear completely comfortable and ready for surgery. His IV's are in and he's "resting" in La-La Land well. Please pray that the doctor's are able to get through the scar tissue from his last surgery and able to get to the conduit quickly. The next update will come around 5:00. We all just stopped and held hands praying in the waiting room. The peace...God's peace is EVER PRESENT! 

"Alfred and Maranatha will keep in PERFECT PEACE; whose mind is steadfast, because THEY trust in you." Isaiah 26:2-4

12:59....Peace to RULE in our Hearts!

Alfred and Maranatha have just now walked through the doors with Bear for surgery! 

Please continue to pray for Dr. Frasier's hands, head, and heart, his team, and Bear during the upcoming hours. 

"He who watches over BARRETT will NOT slumber..." Psalm 121:3

The Journey Continues...

 This is my last personal Blog post most likely for a couple of days. I promise I will write when I can. In the meantime, Holly will be updating on behalf of me to keep everyone in the loop with what’s happening, what the doctors are saying and how Bear is recovering. This picture was taken when Alfred dropped us all off at the door of the hospital this morning. We are all wearing a “Bear’s Journey” Necklace. We are “seeing” peoples eyes go downward to “see” what it is…what a neat way to share Jesus with those we come in contact with.

It is funny to think we have our clocks and watches figured out, one of these days I am going to learn to relax and know God’s watch is much better than mine.  We are waiting which is really what I do best, not so much now but in general I am pretty patient. Bear is making me smile right now. He is so unconcerned about anything other than Star Wars and his PSP. He was given some apple juice so he thinks he can wait a few more hours before they take him back. He discovered a library on the 16^th floor so he’s happy.

We were asked to allow him to be a part of a research study to determine the link between renal failure and Congenital Heart Defects. This is the first study of its kind done on children during and after open-heart surgery. The study is non-evasive and we have always been of the mindset to help unlock the mystery of CHD in any way we can. As an infant he was a part of another study at MUSC in Charleston, SC. Alfred and I laugh as we remember that because the doctor that did the study told us Barrett wasn’t “supposed” to have results that are good. But Alfred looked at that doctor and replied, “But you don’t know our God.” That is so true with everything about Bear. He is constantly showing the world, “You don’t know what my God can do!” Let’s all just put our watches away for today and see what our God is going to do J

Delay....

Quick update: Bear's surgery has been delayed until 1:00 p.m. There is a surgery before him with an infant that is taking longer....nothing to do with Bear. Please continue to pray for Barrett...he's VERY thirsty....pray that the Lord will quench his thirst! 

Night before surgery...

Today began very early. We checked in to TCH (Texas Children's Hospital) cardiology unit at 7:30 a.m. for a FULL day of tests, tours, and talks....Bear was thoroughly tested to make sure he wasn't sick and I was grateful that I had worked so hard to keep him well and away from "germs." He definitely did not like all the blood that was drawn but after it was over told us it "didn't hurt a bit." Bear will be completely put to sleep before IV's, lines or ANYTHING else is done and for that I'm very thankful. When we arrived this morning they ask us immediately if we could do the surgery TODAY. The surgeon had to cancel another child's surgery and wanted to bump Barrett up. Since he had eaten breakfast it would be well past noon before they could begin so it was left to be tomorrow. We will check in at 10:00 a.m. and Bear's surgery is set to begin at 11:00 a.m. Alfred and I talked to nearly everyone involved in the surgery and those we didn't we will meet tomorrow. We are at peace with our God in control and am MORE than confident that Bear is in PERFECT hands, at a PERFECT  time with a PERFECT Heavenly Father in charge! 

Many have asked about coming to visit. Please understand while we are thankful for your willingness to share in this time with us, the next 2-3 days are very critical and physically and emotionally exhausting. We will be updating the blog off/on tomorrow as we are receiving updates to allow you to know exactly what part of the journey we are on. The most important thing to do is PRAY! Prayer is the main thing that is keeping us at PERFECT peace during this time! 

Here and Now...

Why do we spend so much time concentrating on this life? As a believer we get so caught up in the here and now and not in eternity. Barrett reminded me of that very fact this week. We have been talking about his operation and his heart; answering any and all questions that pop into his mind. One afternoon we were by ourselves talking and he looked at me and said, "Mommy, it's okay that God made my heart this way now because when I go to heaven it will be perfect." This life is but a vapor as scripture tells us. We would do well to remember that and not get caught up in things that don't matter.

We leave for Houston day after tomorrow. We are filled with MANY emotions as we get ready but we KNOW our God is able to do exceedingly abundant things in our Bear's life. We check into the hospital on Tuesday morning at 8:00 a.m. for Barrett's pre-op. Our prayer is for him to have no fear on Tuesday and for us to be a witness to any and everyone we meet. To share that only Jesus can be our foundation and through HIM is our strength. We pray Jesus will allow Brock to feel our love through the miles that seperate us and the will be happy and secure in our absence. What a delight that little man is to us!

We sense your prayers and are grateful you are interceding on our behalf. Look for great things to come in the days ahead!

last day at school...

a FULL day....

Monday was FULL...full of information...full of tests...and FULL of emotions. We took Bear to Houston on Sunday night and spent the night in a hotel. This isn't the first time he's ever stayed with us in a hotel but it is the first time he will remember it, appreciated it and enjoyed it. Needless to say he LOVED swimming after his "bedtime" and going to IHOP for breakfast. 

On Monday morning we walked through the doors of Texas Children's for the first time. We have been to hospitals in South Carolina and Atlanta but by far this hospital is the MOST incredible we've seen. I knew as soon as we crossed the threshold into the lobby that this was going to be quite the experience. 

We waited for over an hour for his first test but Bear was entertaining himself with the video games and made new friends in the waiting room. His surgeon, Dr. Charles Frazier was amazing. His bedside manner was real and genuine. He spent a few minutes talking to Barrett and interacted with him. Shortly after, a child life specialist came to scoop Bear off to the movie room so Dr. Frazier could speak frank without worrying something would scare Barrett. This was comforting to me since Bear is asking SO many questions about pain and what he going to "feel" during the surgery. 

Dr. Frazier continued to walk us through the surgery and the inadequacies of his valves and his conduit. We were hoping this would be his LAST surgery and a large enough conduit could be placed in his heart but after much discussion we learned that this was NOT possible. He has a valve that is not functioning and that needs to be replaced. The conduit that is needed for his lifespan will not yet fill his heart. This is not all bad news....just additional information. We've been told this since Bear was born. His surgery will last approx. 6 hours. There is quite a bit of scar tissue that the surgeon must get through. I breathed a sigh of relief when Dr. Frazier told us that they would not STOP his heart during the surgery but he WILL be on bypass for 12-24 hours afterwards. We are thrilled that we could possibly only be in Houston for 2 weeks depending on the success and how quickly he can be removed from the machines. 

I am SO thankful we have the opportunity  to have Bear treated in Houston. We truly feel like this is the EXACT place and the EXACT time that God, in ALL His wisdom, has put together for "such a time as this." We left Houston late afternoon and as much as I was holding back I began to cry. This has been 5 YEARS of waiting, 5 YEARS of appointments, tests, cauterizations, and wondering HOW long is TOO long. 

We were told that beginning this weekend, Bear must be kept away from all crowds, children and basically anyone that could be remotely sick. Even a runny nose can delay or cancel the surgery completely. Tomorrow will be his last day of school. Please join us in praying that NOTHING will interfere with May 27th and that we can keep Bear germ free and healthy. I LOVE my church and ALL the people in the Southeast praying for us and for Bear. It is quite humbling to be lifted up by so many faithful servants. 

Our Journey....

The word "journey" means to pass or progress from one stage to another.

God promises us He NEVER leaves us or forsakes us. God had a wonderful plan for our family in the journey we've been on for a little over 5 years and He has NEVER left us; rather been walking one step ahead of us the whole way. We are now grateful to share this journey with you. To experience the incredible way God wants to use Barrett and our family will overwhelm me in the weeks to come. Maybe there will be a nurse along the way that has lost all hope, or perhaps someone who needs to see a God SO real only HE could perform such a miracle! We are blessed God chose us to be a light and we desire to give Him ALL the glory through this circumstance we find ourselves facing. Please join us on this journey in the days and weeks to come.

For a moment I want to let you take a peek into the beginning of our
journey....

God had a plan that was unlike anything we could have imagined or dreamed. After waiting 7 years and going through fertility treatments Barrett London Burgess was born in December 2003. It was apparent immediately that something wasn't right and he was whisked away for tests and to be monitored. 12 hours later Alfred and I were pulled into a small conference room and told he had a congenital heart defect. The next several days were a blur. Barrett was flown to Charleston, South Carolina where shortly after arriving developed an arrhythmia and was given a beta-blocker through his head. At 9 days old he had open-heart surgery.

That time will be forever frozen in our memory. God was surrounding us with His presence in such a real and almost physical way. The doctors did not give Bear the greatest of odds and his type of CHD is extremely rare.

Bear's Diagnosis...

Truncus Arteriosis accounts for less than 1% of all congenital heart defects. 1 out of every 100,000 CHD births will be Truncus Arteriosis. The hours after the surgery we sat and watched our tiny baby fight for his life. During those moments we didn't know Bear would grow into such a strong-willed and fiercely competitive little boy. He loves to hear stories read over and over and above all he LOVES Jesus and wonders what's wrong with anyone who doesn't. It has been a little over 5 years since that first surgery. We have patiently waited and prayed since that time. We have known since day one that there would be multiple surgeries over the span of his childhood. He has had 3 heart catheterizations and lots of time to learn and grow. Bear loves that his heart sounds like a "washing machine" and he loves to show his "zipper" off. He is safe in his 5 year old knowledge that God WILL take care of him and his "special heart." Bear gives me strength without even knowing it!

Next steps in our Journey....

On Monday, May 4th, we meet with our Houston Cardiologist (we also have one in Austin), the Cardiothoracic Surgeon for testing as well as touring the hospital. We will head back to Houston on Monday, May 25th. Bear will check in to the hospital on Tuesday, May 26th, for pre-op testing and to have the day getting comfortable with his surroundings. The actual day of his open-heart surgery is Wednesday, May 27th. We will update you with more information and the exact time soon.

"God makes His people STRONG and gives His people PEACE."
Psalm 29:11 (The Message)

Alfred and I pray this scripture for our journey and will continue to do so. We request that you join us as well. Prayers of HIS people is what keeps us at HIS throne when we need it the MOST!