Hungry and Tired Burke

We arrived at the hospital at 9am for Burke's heart catheter. He was not allowed to eat anything after 12am. So, he really didn't have anything to eat since 9pm or so when he went to bed. Luckily he sleeps all night long, but I felt so bad this morning when he woke up and was ready to eat. He was such a good boy this morning while we waited in the same day surgery waiting room. He kept close to us and held his blanket so tight. He did his usual, sucking his two fingers on his right hand, and held his blanket close to his nose and face with his left hand. It is so sweet. By the time we entered the Cath Lab, he was ready for a nap and definitely ready to be fed. So, luckily he will be under general anesthetic for the next three or four hours and will be "fed" by an IV. Anyways, we are just waiting to hear from the doctors with an update on Burke from the Lab. Here are some pictures from yesterday when we arrived in Salt Lake City and from this morning before surgery in his cute little hospital jammies.

We will have an update soon on how Burke is doing. And will let you know. Thanks for your prayers, they are so needed.

Primary Children's Here We Come!

Well, we head down to Primary Children's Medical Center tomorrow for testing on Burke's heart. He will have a heart catheter performed on him on Tuesday, June 24th, and possible heart surgery on Thursday, June 26th. The heart catheter testing will be done to check if the left branch of the pulmonary artery has grown since the last testing in April of this year. If that branch has not grown, or if it has grown but not enough, then they will do a procedure right there in the cath lab to balloon open his artery so more blood flow will be passing through that artery. The only problem is that they have to pass through his pulmonary valve which is basically a dead valve to get to the left branch of his artery. The valve is basically dead because it has never worked since his heart was formed. And because of that, it might only be a pin hole in size and they have to get the catheter through that to open it. It is very tricky. But, we are still hopeful that miracles can occur and will occur if we but have enough faith, and if it is in the Lord's plan for Burke. Burke is a miracle himself and we are grateful for his life, his spirit and everything that he has taught us and has brought to our family.

So, after the catheter, Burke will need to stay in the hospital to recover because that procedure is a surgery in and of itself. He might stay over night, we just won't know until we get there. The cardiologists and surgeons will conference both Tuesday and Wednesday and decide what needs to be done on Burke's heart from there on out. If they decide to go ahead with the surgery it will be performed on Thursday. And we also don't know how long recovery will be. We could be there up to four months. We are preparing ourselves for the long term, but it all depends on Burke's heart and body. There is a chance that they might send us home though. If so, we could be home on Wednesday, it all depends on what they find from doing the heart catheter. Needless to say, we are very anxious to get down to Utah to finally decide a course of action for our little Burke.

I just want to thank everyone for all your prayers and faith in behalf of Burke and our family. My family and Tyler's family all fasted and prayed today in a special fast before we go down for surgery. I truly felt support and love and the faith of our family tonight at the fireside held at Tyler's parents house. They usually hold a spiritual fireside the Sunday before their family reunion every year. And this year it was bumped up early, and so we were able to attend before we would need to go for testing for Burke. Anyways, tonight was a great night and I appreciate with all my heart all those who shared their thoughts in behalf of Burke. It was likewise great to hear from the younger kids about their thoughts about Burke, and to all of you, keep sharing your testimonies, that is the way it grows. And thank you for sharing your faith with me, it really boosted me.

I will try and keep everyone posted on what is going on while in Utah. If not, I know my mom
and Jan will know so call them, if you don't hear from me. Love you all and we will see you when we see you. Here are some recent pictures of the kids.





All these pictures are from father's day, we had fun pampering daddy on his day. Emma made a horse cake for daddy with the horses we used on her birthday cake last year. She was so excited to make it. Okay, this post is like two posts combined, sorry for the randomness. Enjoy!

"Burke-a-Buddy Boo"

So, every night Emma wants to say the blessing at dinner time. So, one night Tyler was helping Emma with her prayer and he said, "Please bless Burke", and without even the slightest hesitation she said, "Please bless our Burke-a-buddy-boo". We both cracked up silently during the prayer and then busted up laughing after amen. Seriously this girl is funny.

So, our Burke-a-buddy, is growing up so fast. At almost 10 months, he is 19 pounds. He sits up, pulls himself to a stand and now is officially crawling! Yeah. He acts like he want to walk more than crawl, I don't know if he doesn't like his knees because he bear crawls quite a bit on his hands and feet. But he is definitely finding his place in the family and giving Emma a run for her money. If he wants something, he will go after it until he gets it. He is a strong boy. He is the sweetest thing too. This was just taken yesterday, Burke was trying to look around the camera to find me.

Here is Burke and Katerina his cousin. My children look like they could be in her family it's crazy how similar they are.

This was cute to see them play together in the pantry. Burke is so big and he is exploring more places in our house now that he can get around.

Just an Update!

Here are some pictures of what our little kids have been up to. My child now knows how to put her own bread in the toaster to make toast. She is very independent. Her favorite part is putting the butter on the toast. Oh, yes a huge glob of it too. Yummy! But actually, she is pretty good at spreading the jelly. She was very proud of herself as was I.
Here is my poor little child, who was absolutely exhausted one evening. He rarely drinks from his bottle with other people in the room especially his very interesting big sister. One late afternoon he drank his bottle with Emma in the same room and then he fell asleep to it in my arms. It was heaven, because he rarely does this. I didn't want him to take a very long nap and so I just laid him down on the floor in the family room and he actually slept for quite awhile even with all the noise me and Emma were making. He is definitely the second child; put to sleep on the ground and then covered with any blanket in sight, which happened to be Emma's pink blanket. Our poor child. Sorry, Burke.

Here is Emma eating watermelon with her cousin Olivia at Gwamma J's house. One day I was at the store with Emma and Burke and when we started putting the food in the cart Emma commented on every single food, "Oh, I LOVE watermelon, me and my Olivia LOVE watermelon." "Oh, I love beans, me and my Oliv love beans!" (She hates beans by the way.) It had to have been the funniest thing Emma has ever said. Because she was totally serious and commented on basically every food we bought. It made be laugh out loud. So, this is her and her Oliv eating what they both love at a place we all love.

Here is the Burkers getting a bite of the action. Okay, I have to do some child picture comparing here. So, Burke here is 9 1/2 mo. old eating watermelon. The picture below is of Emma when she was 9 mo. old chowing on watermelon at the Payette Lake. Don't they look alike? Okay, so the lighting is different, and she is way more chunkier, but I thought it was fun to have such similar pictures at the same age. Burke

Emma

Okay, this is classic. Emma as you know is very independent. I mean way over the top "do it myself" kind of girl. So, as a result, she is very stubborn and rebellious when it comes to certain things. And one of those things is her bed and going to sleep in her bed. She has a trundle bed and we never put a mattress underneath the high bed because there was no need, she slept in her regular bed just fine. Until, she started coming into our bed almost every night and wanting to sleep with us. Or, she would take all her bedding and sheets and sleep right outside her door and Burke's door in the hallway. Just in spite. Major action was necessary. So, we thought to put a mattress on the pull out bed to get her to think it was way cool to have two beds in her room, and maybe, just maybe, she would actually sleep in her own bed. That lasted about three days. No, she just figured us out too quickly. And this, to Emma, is a better option than both her beds.

It was so hilarious, she was out cold. Doing the bobbing of the head and everything. Classic.

Tyler Martin Johnson: College Graduate!

On Saturday, May 17, 2008 Tyler Martin Johnson received his diploma in Finance from BSU. It was a wonderful day and I am so proud of him and sticking with college. He really gave so much to his schooling and endured to the end like a champ. I have never been so proud of him and his determination to finish what he started.

Here are some pictures of the graduate on his big day. I love you so much Tyler and am grateful for your hard work and passion you put into everything you do!

Those smiles are as big as they are because from this day forward we are not going to be starving broke students any longer--do you see the utmost joy on our faces?!

Here we are with Tyler's parents.

My parents came all the way from Northern Cali to support and honor Tyler on his big day! Thanks so much for coming mom and dad it was a fun weekend!

"The women" in Tyler's life excluding Emma.

PiCtUrEs!!

I thought I would add some recent pictures of both the kids and not just of Burke. So, there are a ton a pictures that I just downloaded of my camera and I couldn't choose only a couple, so I added a lot. Hope you enjoy!

Here is Emma on the tire swing at the best park around! She hates swinging on swings regular, I think it gets to her tummy, so she figured out a new way to do this tire swing and she was having a ball!

Emma and the Burke watching TV.

The Labradors invited us over for dinner on Mother's Day. Here is Rafael and Emma under their fort they made. They love playing with each other.

This is the best Mother's day present ever! This is a miracle for Burke to cuddle and fall asleep somewhere other than his crib! I was loving it!

Bath time is the happiest time of the day!

Can you believe how much they look alike! It is so crazy, and they are so much alike in their personalities it's fun!

Our latest trip to Primary Children's!

Here is Burke on Temple Square for his very first time on Sunday, April 13, 2008.

On April 13, 2008 we headed to Salt Lake for testing on Burke's heart at Primary Children's Medical Center. He received a chest x-ray that afternoon, and then went to a clinical exam with two Cardiologists, Dr. Jou and Dr. Su on Monday the 14th. These Cardiologists were also there when Burke was born and were his doctors when he had surgery when he was three days old. So, it was good to see familiar faces. At the clinical exam, Burke's oxygen saturation levels were checked and Dr. Jou asked us a ton a questions on how Burke had been doing for the past 8 months. He could not even believe how well Burke looked for having oxygen levels in the mid 70's (74% on average). He then went on to explain what surgery would be performed on the 17th of April if everything checked out well in the heart catheter that next morning (April 15). He did not foresee any problems with the heart catheter, and we were very hopeful that Burke would have his heart fully repaired and have the surgery be a success. We left the doctors office hopeful and excited for the next couple of days, yet still slightly nervous for the heart catheter in the morning. Burke fell asleep with the help of his bottle. He was exhausted from a long and long awaited day.

Tuesday, April 15, 2008: Primary Children's- 6 a.m.

We arrived at the hospital at 6 am for his heart catheter. Sweet little buddy was still asleep luckily. They checked us in and asked us a bunch of questions about medications he is on and if he has been sick recently and we told them about his recent ordeal with RSV. We were so grateful because Burke got RSV but was never hospitalized from it. The worst of it lasted 2-3 days max and he was good to go. But, the nurse eyebrows lifted at the mere mention of RSV and began asking more questions about when he had it and if he was hospitalized or not. I explained that I did not know for sure when he had it, but she told me she had to know. So, I tried to remember and when my brain could not come up with the answer on its own, I called my pediatrician and had them check the records. Sure enough Burke had RSV on March 18, 2008 just four weeks ago to the day. It was definitely cutting it close and the nurses had to make sure that it was okay to still do the heart catheter (because it was an evasive procedure and he had to be sedated to have the test performed). They checked with a ton of people and finally they told us that they were still going to perform the catheter. Thank goodness! Primary's policy is that you have to be recovered from RSV for at least 6 weeks before they can do surgery. Since Burke's case of RSV wasn't severe they felt okay to go ahead with the procedure.

Here is Burke in his cute little hospital jammas before they took him into the cath lab. Sorry the picture is blurry, he was getting tired and this was the best picture we could get. Poor little brother, he just looks like he is saying, "mom, please help me, why are we doing this?" Seeing his face in this picture just broke my heart.

The heart catheter took about 2 1/2 hours. It was a very long wait. Burke did great and everything went very smoothly. They sat us down and showed us the pictures and video of his heart. It was amazing to see his tiny heart beating and the technology they have now days that enables us to see his tiny arteries and everything that makes up his heart. We are blessed to live in this day and age. The doctors began to tell us what they found in the catheter. And what they found was not good news. His pulmonary artery has not grown very much since the last surgery. The pulmonary artery was the one that was a third of the size that it should be when he was born. Dr. Kouretas, Burke's heart surgeon, slit open the branches of the pulmonary artery as it splits off to the right and left lung. He slit it length wise in an effort to help that artery to grow. The right branch grew from last surgery, but the left side has not grown as much as they had wished. And they said they cannot perform surgery to fix the other problems in his heart until that artery is bigger. Or, "fat" and "juicy" as they put it.

The first problem was the pulmonary artery and that it didn't grow. The second problem they found in the cath lab was that there is a tendon-like cord attached from the tricuspid valve to the septum. The tricuspid valve is the valve which separates the right atrium and the right ventricle. The septum is the wall that divides the right and left sides of the heart. This cordea (sp?) or tendon-like cord is in the wrong spot. It happens to be located in different places on different people. But for Burke, it is in the worst spot it could be in. The cardiologists told us that if the surgeon nicks that or cuts it then it would not be a good thing for Burke. That valve is vital to the heart staying alive and healthy. The reason it is in the wrong spot it that they could not baffle the aorta over the the correct side of the heart because of that cordea is in the way.

We couldn't believe what we were hearing. We were so happy and excited and hopeful just the day before only to be crushed when we hear that they found some not so good things with his heart anatomy. So, from here Burke was sent upstairs to recover for the next four hours after his heart cath. The surgeons and cardiologists would conference the next day as to what would happen next. Burke did really well in recovery and was so hungry he gulped down his bottles like he had never been fed before. He was not allowed to eat or drink before his heart cath, so he was soooo hungry! It got a little rough nearing the end of the four hour recovery, Burke was really fussy and he seemed like he was in a great deal of pain. His bruise in his groin was so huge it was unreal. He would not even move his right leg for the longest time.

Dr. Kouretas, the surgeon, came to see us along with Dr. Jou in post- op. We had so many questions for him and we began discussing the different possibilities with Burke's heart. He told us that he would not perform surgery because the RSV was too recent, he needed more time to get it out of his system. Another reason was that they wanted some time to see if his left pulmonary artery would grow. They told us to chunk him up and get him as plump as we could. Another heart cath was scheduled for six weeks later on May 20, and tentative surgery on May 22. But some good news that the surgeon told us is that the cordea that the cardiologist told us could not be cut or hit, could actually be clipped and re-attached in a different location on his septum. This is the best news we had heard all day. Dr. Kouretas has done it a couple other times where he has disconnected the cordea and moved it so that he could move the aorta over to the correct side of the heart. Hope. We have hope. And we are so grateful for hope and for miracles we see all the time in our lives in regards to Burke. This was a long post, but I have been needing to record this for a long time, and just haven't had the emotional or physical energy to begin writing it. I have more to explain. Because just today we found out that surgery is postponed six more weeks out because Burke has an ear infection and had a low grade fever. I will explain more later, but as of May 15 we are not going down to Utah next week for surgery.

His heart catheter will now be on June 24 and tentative surgery on June 26, 2008!

Here are some pictures of Burke soon after we got home from our trip in April. He was on oxygen for a couple of days, until we checked with the doctors and they told us to put it on him at our discretion. He is doing great with out the need for the oxygen. You would never think that he has a heart condition. He is so sweet and such a blessing!