We Are In Good Hands

Today was our long awaited appointment with the transplant team at UCLA.  We started the morning off meeting with six people from the transplant team.  We talked for three hours and went over a ton of information.  We then grabbed a quick bite to eat, got some labs done, took a tour of the PICU floor, game room and private rooms, and ended our time talking with one of the transplant surgeons.  It was a long day but very helpful. Everyone was so wonderful, made us feel great and we walked away just feeling so grateful to finally get to this wonderful place.  We learned a lot and feel more at peace as much as one can feel in this situation.  They are going to list him right away probably in the next 30 days.  We had been told previous that Noah's pressures were high and we really had no idea what that meant.  We did learn today that the normal pressures in a person are 4 and his number is 14 and continuing to increase.  Just to give you an idea the surgeon said he sees patients at complete heart failure and there numbers are between 25-40 so his are high and we do not want him to get to the critical point.  The team's main goal is to get a heart NOW while he is able to be at home before Noah goes into complete heart failure.  We think that sounds like a GREAT goal.  We will be in contact weekly with the team and once we are listed we have to stay close by.  They are still estimating 6-9 months but it is very dependent on a lot of factors still.  Another positive thing today is that he gave Noah permission to go back to regular activity. No competitive sports but he can run and play like a normal kid.  The reason for this is because they need to gage his response.  He has been on no activity since January so they can't tell if he has slowed down.  They want to see how tired he gets and how out of breath he is.  Great for him scary for mom and dad :).  He tested this out when he got home tonight and he did one lap and ran up the stairs and his breathing was very labored.  I was very surprised by this and it made me a little sad.   Up until now he hasn't really shown any signs that he has a sick heart.

Please continue to pray that God would protect Noah until he gets his new heart or that he would completely heal him and take it all away(we do have a big God who is capable of this) Pray that he would be able to process all this information and ask us all his questions.

Pray that God would use this situation for his glory

Thank you once again for all your love and support, we are beyond grateful for you all.

Noah's Prayer Warrior Map

We bought a United States map and a World map to show Noah how many people are praying for him all around the world.  We have marked a few states so far.  If you are out of state or in another country and have been praying for our sweet boy, would you please drop a note and tell him.  You can leave a comment here or on his face book page Noah's heart.  We want to see if we can get this whole thing filled up :)

by his own hand, he leadeth me

Hello dear friends of the Lietzau family.  This is Marla, guest blogging tonight so that Melody can get some much needed rest after another big day.

To start off, I want to extend two huge thank yous - first, a thank you to the entire Lietzau family for their humility, courage, grace, honesty, vulnerability, generosity and faith not only in stepping confidently into these good plans that the Lord has chosen for their lives, but also in sharing their fears, their struggles, their victories, and their uncertainties with so many.  And secondly, a thank you to those of you who have committed to linking arms with these friends and who have already sacrificed for their sake.  Thank you for being willing to enter into suffering and learn how to grieve, to hope, to trust, and to pray with this family.  Thank you for loving these friends more than you love your own comfort and safety.  May we all press on in this good work and excel still more as we become extensions of the love and grace we have received in Christ.

Here are the updates from today that I got from Mel.
-Noah's ECHO today came back unchanged.  She said everything looked the same.
-There were some changes Hannah's EKG, so they gave her a Holter monitor (portable EKG monitor) to wear for 24 hours.
-Melody went to Urgent Care because she has been experiencing dizziness for the last two days.  She is back home after finding out that she has some fluid in her middle ear.

This is what is coming next.
-Noah has his appointment with the transplant team at UCLA on August 9.
-If everything looks good with Hannah's 24 hour monitor, she will have a follow up appointment in three months.
-Mel will be going in next month for an ECHO.
-Jonah will go for an ECHO in 2 months for an initial visit

This is how we can be praying.
-Pray for Mel - that in the coming days and months the Lord would sustain and strengthen her as she continues to walk along the path marked out for her.  Pray, too, for this ear problem - she isn't able to take decongestants, so she'll be taking antihistamine and ibuprofen to try to get rid of this!  Pray that it clears up quickly and that she would have patience with herself and with others as she is physically weak.
-Pray for Noah - that the Lord would keep this boy's heart strong enough to live life with his family and friends, that he would stay out of the hospital, and that as he anticipates this heart transplant and all that it will entail he would have a growing understanding of the reality that Christ had to die in order that he might have new life.
-Pray for Hannah - that these changes they saw on her EKG would be shown to be nothing after this 24 hour heart monitor and that God would strengthen her little heart and keep it functioning as it should.
-Pray for Jonah - that he would be protected from fear as he enters his own test in a couple of months, and that it would ultimately show that his heart is healthy.
-Pray for Jason - that God would be near to him, shepherding him as he tries to shepherd his family well.  Pray that he would have wisdom and courage to be an advocate for the good of his family, and pray that the Lord would provide richly for all of his needs as he works hard to provide for the needs of his family.

I'm so thankful that we can be a people who have more than just a glimmer of hope.  In all of these things, we abound in hope!

"For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us...For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God...Now hope that is seen is not hope.  For who hopes for what he sees?  But if we hope for what we do not see, we wait for it with patience.  Likewise the Spirit helps us in our weakness...And we know that for those who love God all things work together for good, for those who are called according to his purpose...What then shall we say to these things?  If God is for us, who can be against us?  He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?" (excerpts from Romans 8:18-31)

There is comfort in the assurance of the presence and purpose of God.  He leads his children directly.  He hasn't hired any extra help to lead and guide us, to discipline and refine us, to comfort and encourage us - he does it directly.  Like the old hymn says so well, "He leadeth me, he leadeth me, by his own hand he leadeth me!  His faithful follower I would be, for by his hand he leadeth me."

Father, help us to follow faithfully as you enable us to trust that it is, indeed, your good and gracious hand that leads us.

Stronger

It's been a rough weekend but I love when you hear a song and it just ministers to your heart.


http://www.youtube.com/watch?v=emgv-VRtMEU

2,089,187 

Choosing Joy

We have really been enjoying our Summer.  It has been so much fun checking things off our Summer Activity list.  We have had back yard movies, fancy movie night, camp out, smores, swimming, and a whole lot more.  We are so determined to have Joy and to model that to our children in the midst of this trial. We have been having so much fun and just making the most of every minute.  It would be too easy to be consumed with fear and to wallow in all the what if's.  We know with out a doubt that God is working all things together for good and are confident he is using so many of us.  Don't get me wrong we certainly have our days.  There are days that I cry out to the Lord for strength just to get out of bed, there are days that I ask him to take it all away, there are days that are just so hard because we hear information that is hard to swallow, and there are days where I picture my baby hooked up waiting for a heart and it is just too much to bare.   But seriously time and time again God shows up in the sweetest of ways.  God is really doing a work here.  So many of you have chosen to come along side of us through so many creative ways and seriously thank you just doesn't seem enough.  Please know that we are so grateful for all of you.  On August 1st Noah meets with Dr. Chang for an Echo and check up and then on August 9th we meet with the transplant team at UCLA.  We are so thankful to be at UCLA and are hoping to get lots of information and answers at that visit.  Noah has started taking revatio to increase his blood flow. He has responded fine to the medication and we will be able to tell from his echo if it is helping.  Noah is still complaining every so often that his heart feels funny but other than that you would never suspect he had a heart problem.  Thank you for your continued prayers.

Answered Prayer

We got a phone call earlier this morning from Jason's insurance broker letting us know that we will be able to switch to a PPO effective August 1st.  This is a huge answer to prayer.  The PPO will allow us to see any doctor we choose and not have to get approvals and referrals.  It will be more costly but we know god will provide as he always has.  So thankful to get this news.  We know it is just the first of many answered prayers to come on this journey.  We can now set up our appointments at UCLA and began the process to get him on the transplant list.  Praise God for answered prayer and clear discernment.

Psalm 34:17

New International Version (NIV)

¹⁷ The righteous cry out, and the Lord hears them;
    he delivers them from all their troubles.

His Power Will Prevail

I know in this journey we will have good days and bad days.  I'm so thankful that even in the hardest of days God is so faithful to bring me strength and comfort.  I can't imagine my life without him and I long for the day that I'm in his loving arms. This week has started off more promising than the last.  We were able to get Noah's much needed medication filled and he will start that on Friday.  It is the same one that his baby sister is on so he is already somewhat familiar.  Jason is in contact with his works insurance broker and she is working hard to get us switched to a PPO.  We will find out at the end of the week if this is approved.  Please pray that it gets in the right hands.  This will allow us to get to UCLA and have Noah evaluated at there Transplant center.  We also have talked with a transplant doctor at CHLA who is trying to get us an appointment there as well but realizes are ultimate goal of wanting to get to UCLA.  These are all good things that seemed hopeless last week so we are praising God.  The days can be difficult when we think about all that lies ahead but the things that have made this so much easier is the level of support from all of you, my time in the word, and listening to beautiful music that ministers to my heart.  Our church is blessed with a music director and elder that has a gift for putting scripture to beautiful music. One particular song that I have been listening to is this one. His Power Will Prevail

Lyrics | Description

Rest assured today that the Lord your God
    is the One who goes ahead of you
He will put the enemy to flight;
    what He’s promised He will do
Like a raging fire, He consumes the foe;
    making Satan and his forces go
We don’t have to fear, God is on the throne,
    His power will prevail
God’s deliverance is as good as done;
    who could ever count the victories won?
With a watchful eye He protects His own;
    He’s the Shepherd, we’re His sheep
When we go to Him with an urgent need
    He is always there to intercede
We don’t have to fear, God is on the throne,
    His power will prevail

Each temptation here, every trial we face
is surrounded by His awesome grace
Supernaturally strength is given us
    so that we might persevere
God is never late, help is on the way;
    He is faithful in the day-to-day
We don’t have to fear, God is on the throne,
    His power will prevail

You can go to his website to download his music. www.waltharrah.com  I hope it ministers to your heart as it has mine.