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!!