New Day Fundraiser

New Day needs your help. 

New day is the foster home that found Levi when he was 7.5 months old, laying in a crib, weak and malnourished.  They have a formula ministry to several government run orphanages and Levi's orphanage happened to be one of them.  They were able to arrange for Levi to be moved to New Day.  No doubt, Levi would have died in the orphanage.  This is what New Day does.  They take in children with severe medical needs that otherwise would die.  New Day takes these children and gets them the medical care they need, not to mention the love they receive.  This is all funded by donations.  No government help is given.  Levi received his first surgery that saved his life due to generous donors.  Right now there is a little boy named Benjamin receiving medical care. It is costing New Day $400 per day. He is just one of many babies currently receiving medical care.  New Day has been doing a fundraiser the past two weeks trying to raise $12,000 for all the precious children in their care.  Right now they are up to $6954.   Calls come in daily from orphanages asking New Day to take children. They frequently have to turn children away due to no beds being available.  New Day is some of these children's only hope. Please help by making a donation to New Day. It does not have to be much. Even $5 will help.  That's one lunch you could pack instead of buying.  If you want to read more about the children that have been helped click here.  http://newdayfosterhome.blogspot.com/ 

Levi was the focus child yesterday. Let's help them raise the remaining $5000! 

Three Months Home!

Levi has been home three months!!!  In three months he has grown 1.25" and gained 1#.  He can't seem to put on weight as his heart works so hard everything he eats gets burnt right off!!!  But he is shooting up!

In three months we have had ear tubes put in, a heart cath, a  bronchoscopy, 2 echos, an ultrasound, and a cleft lip and palate consult.  Not to mention the visit to the international ad option clinc and dentist.  We have been busy, but Levi has held up like a champ.

So what do we know from all this? Well, we know Levi is on target developmentally except for expressive speech which is expected with the cleft. He actually expresses himself quite well and frequently! ;)

We know that he failed his hearing test due to fluid in his ears, but that is all taken care of now so hopefully when they test his hearing in a month or so he will pass with flying colors! He is obviously feeling better because once the tubes were put in this little guy has been active!!! Of course this has caused more labored breathing.

We know he has a high level of lead in his system that they are monitoring and he will be tested in a month or so to see if it has gone down.

We know he does not have a spleen but they are still running tests to see if he has splenic tissue which would work like a spleen. This would be awesome because he then could stop his daily dose of amoxicillin. Be praying for that!!

We know he has scar tissue on his trachea causing  stenosis but this will be fixed April 11th.  He will have a lip adhesion done at the same time, but the actual lip repair and palate will be put off until after his heart is repaired.  I have to say I am dreading this surgery because I LOVE Levi's wide joyous smile.  I am going to miss it.  I know he will have a new joyous smile but it wont be the same.

We have a confirmed heart diagnosis of a Complete Atrioventricular Canal defect (AVD)with Double Outleft Right Ventricle (DORV) and pulmonary stenosis (PS).  Also known as a complete cardiac cushion defect. China was right on with their diagnosis.

The BEST news we discovered is that our little man will have a 2 ventricle  heart. It looks like this surgery will be June 26th and Levi will be out running with the best of them by the fall.  He already has big plans for soccer and basketball.

What is yet to be done? Well, we need to do the liver spleen scan to determine if there is any splenic tissue.  We need to get our vision tested and hearing re-tested. Lastly, the doctors want to run an upper GI to see if Levi has malrotation  of the bowels.  I guess with all his other midline issues this could be one as well and they want to rule it out. If he would have it it would need to be dealt with as well. Be praying he does not!

We have been in AWE of God's grace and healing! This was the little guy, that when we received his referral, both china and the US told us he would live with a single ventricle heart.  That his left ventricle was too small.  That his pulmonary artery too narrow.  That he would need a heart transplant at some point. That even with treatment, he may have too much damage to his lungs by the time you get him home to help him much.  This was the little boy surgeons in China would not touch because of the severity of his tracheal stenosis.  Levi has had hundreds of prayer warriors praying for him and his healing.  Today, he is the little guy that will have two ventricles.  That has tracheal stenosis, but not to the severity that was seen on the MRIs.  God has big plans for this little peanut. I can't wait to watch them unfold. And, I am so glad Mark and I listened to our hearts and not our heads.  That our children followed willingly, trusting that God was leading.  And what a wonderful thing it has been to watch our children see firsthand our God work! Our God heal!

"Now to Him who is able to do immeasurably more than all we ask or imagine,
according to His power that is at work within us,
to Him be glory in the church and in Christ Jesus throughout all generations,
for ever and ever! Amen."
Ephesians 3: 20-21

Healing Levi's Heart

I am hesitant to write this as none of it is set in stone, but I wanted you all to know what is going on so you can be praying specifically.The cardiologist called this morning. They were going to meet tomorrow with the cardio/ENT team to discuss Levi's heart and tracheal conditions but they have postponed it until next Wednesday.  Reason being, they want to do a sedated echo next Tuesday to look at Levi's Arterial Valve.  People have 2 arterial valves. Levi only has one very large one.  They want to look and see if there is enough tissue to divide the valve into two working valves.  IF this can be done,  our little guy will be able to have two working ventricles. They would then patch two very large holes and do a Right Ventricle-Pulmonary Artery conduit to re route his blood.  (His pulmonary valve and aortic valve are not where they should be.) 

If the arterial valve can not be divided he will have to have the Fontan procedure which will produce a single ventricle heart. The RV-PA conduit would not have to be done.

While the 2 ventricle surgery is a longer, more complicated surgery, the end results are better.  Levi will live a normal life with two ventricles. With the Fontan his heart will only last 10-20 years before he would need a heart transplant.  So, please join us in prayer for his arterial valve to be able to be divided into 2 valves!!

Next, it looks like the tracheal stenosis may be dealt with before the heart.  Reason being, the doctors feel Levi's pressures are good enough right now to wait 4-5 months for heart surgery.  They are concerned that his trachea may not handle being on the vent for such a long surgery and then the recovery time.  If they do the trachea first they can do the heart 3 months later and his trachea will be good to go. So unless this changes next week, it looks like his heart surgery will not be until summer and his trachea surgery in the next couple of months.  They are also going to try and do his cleft lip and palate at the same time as his trachea.  The trachea surgery sounds pretty simple but the recovery does not sound fun. They will cut a slit in the trachea and then take a piece of cartilage  from Levi's ear and use it to widen the circumference of the trachea.  He will then be placed on a ventilator for 5 days to allow the trachea to heal in the correct position and not close back up.  This 5 days however will help with the healing of the cleft as well.

Our little guy has finally gained a pound and he has grown 1.25" since coming home!! Continue to pray for weight gain as he doesn't have much he can lose when the surgeries start up!

We will continue to update the blog as we find out more but for now be praying for the valves! We will know by next Wednesday!

Surgery Day

Today was Levi's surgery. He woke up remembering he could not eat. He had no complaints until Samuel ate. Then he was a bit mad. He walked around carrying a spoon yelling "NO!"
This was short lived however. We arrived at the hospital at 11:30 and everyone was ready to take us early. So we were rushed through the registration process. Levi was a bit worried once the nurses started checking his stats. His oxygen level was low hovering between 79 and 80.  He ended up falling to sleep and not waking until they gave him some medicine to help him relax. This medicine made him one silly little guy and by time I carried him back to the surgical unit he was not worried in the least!!  He is one brave little trooper!

The ENT doctor came out about 2pm and explained Levi's stenosis.  Levi does have tracheal stenosis that will need to be repaired.  It was not congenital.  It was caused by his first heart surgery. The vent was put in I such a way that it rubbed on his trachea creating scar tissue.   However, it is a very thin stenosis, 360 degrees. He said it is repairable and not a severe type.  Thanks for your prayers for this because on the initial X-rays his trachea was nor only narrow, but twisted.  No twisting is present!

I will update this post when we hear from the cardiologist. Keep praying!

Levi  came through his surgery like a champ. Honestly, he is the bravest little guy I know.  His ear tubes are in and there was a lot of drainage. I can't imagine how uncomfortable that must have been for him all these months...years.  Excited to see how they effect his speech 
and hearing!

Now for the AMAZING miracle!! In November, the ultrasound and echo showed Levi's heart as working with only 1 ventricle and a very narrow pulmonary artery that was only allowing drops of blood to pass through.  TODAY, they found 2, yes 2, good sized chambers and a nice sized pulmonary artery functioning as it should!!! Praise be to God!!  The cath doctor is not able to see how the valves are attached, but...if they are good our little guy will have a 2 ventricle heart!!! They will repair the holes.  So, our new prayer request is that Levi's valves would be found to be in perfect order! This will be told by another echo. I am sure our cardiologist is going to be surprised when he sees the results of today's cath!!  

The Cardiologists will be discussing Levi's test results next week to decide where to go from here.

Thanks for your prayers!!

A Hope and a Future

Last night the hospital called.  We have all the details surrounding Levi's surgery. 

January 24th, at noon, we will arrive at Children's hospital. Levi's ENT surgery will begin at 2pm.  During this surgery the doctor will be putting in ear tubes and doing a scope of his trachea to determine what needs to be done for his tracheal stenosis.  There is a chance nothing will be needed to be done. Please be praying this is the case! 

At 3 pm he will be transferred, while still out, to the cath lab. This will last around 3 hours. Then he will be in recovery for an hour and transferred to the heart floor to rest for 6 hours.  We had hoped to come home that night but will have to wait and see. If any intervention is done during the cath we will automatically have to stay the night.  Also, due to the 6 hours of rest we are talking midnight or so, so they may ask us to stay because of that.  If we have the option, we will come home even if it is that late.

Levi will not be able to eat any food after midnight on the 23rd. Since his surgery does not begin until 2pm, this is going to be very hard for Levi, who loves to eat ALL DAY LONG.  He also can't afford to lose much weight! Please be praying his tummy feels full and he is not miserable all morning and early afternoon.

We were also told, while the doctors usually let parents stay back with the child until they are put to sleep, this is not the case for Levi.  Due to his airway being considered "critical" they will not allow us to be with him while putting him under.  This is going to be hard on him and us! 

As I was talking to Levi about all the upcoming events his face just fell. He looked very sad and said, "No" then pointed to his heart.  He clung onto me and kept saying , "No."  As Little as he was I believe he remembers his first surgery in China. Obviously, any heart surgery is going to be painful, but on top of painful he was alone.  Now, we were blessed because New Day always sends a nanny with the child to the hospital and this nanny stays with the child. However, in China, nannies are not allowed on the floor until the child is moved down to the regular floor. So, Levi was alone. He woke up to a ventilator alone.  He experienced fear and pain alone.  Once he was feeling better and moved down to the floor his sweet nanny was there to comfort him.  But, until then, nothing.  I keep explaining to him Mommy and Daddy will be there with you as soon as you wake up. We will be there the whole time except when you are with the doctor.  I am not sure he comprehends this. Please be praying for his peace.

Pray that the ENT and Cardiologists have steady hands and God's wisdom to determine the best treatment for Levi.    We also ask that you pray they would find things not as bad as they believe. That God would have already been healing Levi's heart and trachea.

Pray for Samuel who will be at home overnight for the first time without us. That he would also be at peace and feel secure.

On a less serious note, two nights ago I watched a webinar about living life with a single ventricle.  Levi has been asking to play soccer because Samuel will be playing this year. I keep telling him I do not believe he will be able to do that but maybe he can help daddy coach.  Well, the doctor doing the seminar said that kids can play sports. It has nothing to do with the Fontan it has to do with the strength of the heart and whether or not arrhythmias are present.  Well, I went and told Levi he may be able to play soccer and he threw up his arms and yelled, "YAY!!"  He was so cute. So excited at the possibility.  

So we will meet this surgery head on  in hopes that Levi can run, jump, and play soccer like all little boys should!

Thanks for your prayers!

Two Months Home

January 3rd marked Levi being home for 2 months.  It seems like he has always been here.  He is doing amazing and we love to just sit and watch him. He has a wonderful sense of humor and loves to tease. His facial expressions are wonderful!!! He loves to just sit and play with his toys and seems to have a wonderful imagination.  He loves to board games and read books.  Play doh is also a favorite.  He is getting pretty good at running but can't do it for very long. His new task he is trying to master is jumping!  He is determined to keep up with Samuel!! Samuel and Levi are turning into good buddies. They love to mimic each other, which can be good and bad! They are too funny to watch when they get all giggly about something.

While Levi has attached well to us he still had a few behaviors we were working on.   One, he tended to play by himself. While he let mom and dad join in he didn't really relish the other kids joining in. I firmly believe this was a trust issue. Him trusting that they wanted to play with him.   Now he let's them join in and even seeks them out!!   He also, if he fell or got hurt, would just say, "OW" and keep going, not wanting any cuddles.  Today for the first time he bumped his elbow, started to cry, and sought me out for some hugs and kisses!!!! He is figuring out that we are family. That we are always here for him. That he can come to us for anything.  My heart was happy!

He also loves to pray. At dinner he wants to be the one to pray. I so wish I could understand what he is saying. Due to his cleft it is sometimes hard to grasp all his words.  What we do understand is his thanking Jesus for each of us.  He will also point to his food, drink, and napkin for us to say what it is. Haha.

Levi goes in on January 24th for his heart catheterization.  He will also have a scope done to determine the extent of tracheal stenosis and have ear tubes put in.  After the cathe is done we will have more information as to what we need to do so Levi and run and jump with Samuel without getting short of breath and blue! Please  be praying for the doctors to have wisdom concerning our son.

What Gift Awaits?

    One month has already passed since we have been home.  Levi is doing amazing. Then again, he is an amazing little boy! His transition into our family has been incredibly easy.  He has fit right in as if he has always been here.  He and Samuel have had some normal sibling rivalry, but nothing extreme and in between there is much giggling!! The biggest thing has been for Levi to understand that Samuel wants to play with him and help him. Levi tends to push Samuel away when he tries to love on him.  I firmly believe it is a trust issue.  Of course, Samuel needs to learn that Levi likes to do things himself and does not always need brother interfering!! :)  As I write they are both happily playing with Play-Doh.

It has been fun to watch him begin to take part in family traditions.  When we sit down at the table for supper he now hold out his little hands to participate in prayer time.  At the end he wants say his own prayer. Same at bedtime. I wish I knew what he was saying!!

He is also learning to rough house! He loves being chased now, and will giggle with glee. He loves tickle time and wrestling around with Ethan and Daddy.  Sometimes due to his cleft his laugh sounds like a cry and I have to check his facial expression to see if he is happy or not....more than not he is laughing!!!

The other thing we have noticed if he falls or gets hurt he just gets up. No tears. No coming to mommy for kisses and loving.  Just an, "OW" and he is on his way.  Well, this is beginning to change. He sees Samuel and Meg come to me for comfort and will mimic them, even when there is nothing wrong. Of course we make a big fuss so he knows he can come to us for comfort.

Levi is a very affectionate little guy. Loves to be held,  give or blow kisses, and give hugs. Loves to rock and sing songs. Loves to sit on our laps and read books.  He does not like mommy to be too far out of sight, though!  And he will tell you, "I love you."Honestly, we were prepared for a longer, harder transition and several months of finding our new norm, but our new norm just happened with his arrival.  It was like he was always here.  I should known that this would be the case.  God led us to this adoption. He led us to Levi. So why would I expect a bumpy transition?  God does not call us to something that we can not handle. He does not call us to do something that will disrupt our family or cause disunity.  His desire is to bless us. To draw us closer to Him. Sometimes we have to take that first step. To step out in faith knowing that His blessing lays ahead.  God has given us a wonderful gift in Levi.  We had to take the first step in order to receive our gift.  God was holding it out to us but we had to take it from Him.  I am so glad we trusted God, because I can not imagine our family without this little man.  God has a gift for each of us. His biggest gift was that of His son, Jesus.  His gift of forgiveness and salvation.  Have you taken that first step to receive His gift?  He is holding it out to each of us.  All you have to do is ask and receive. 

If you have, what other gifts does He have for you?  Is He holding out a gift that you have not yet taken the step to receive?  We are thankful for the gift God gave us when He chose us to be Levi's parents!! 

I had to include this last picture. We set up the nativity and I was explaining it to Levi, who was quite intrigued.  He loved holding each of the pieces  When I set him down he ran out and got his cement truck and put it in the manager with baby Jesus.  His gift to the baby. It has since been removed because, after all, a 3 year old has many things to build and is in need of a cement truck! Merry Christmas!!