Tuesday, October 14, 2014

It's not about the why it's about the who

The last two weeks have been rough.  I have been to at least eight doctor appointments. Six of which have been for me.  I have been told after allergy testing that I'm allergic to almost everything except foods(Thank you Jesus),I had a CT scan of my sinuses, told I need tubes put in my ears, after a PFT test was told my breathing is declining, and was told I can no longer drive with out adaptive equipment(that one was the hardest). There were days where I felt like Alexander in the book "Alexander and the terrible no good very bad day". Great book by the way.

Normally I can tackle each hurdle as they come knowing God is working out his plan through each obstacle I face.  This last week however I finally broke and was crying out to God Why?  Why so much?  Why my driving? Why does it all have to be so hard?  Many of these things I knew I would have to face with this disease I just thought it would be further down the road for me.  I knew all the answers to the Why in my head but my heart was buried in my circumstances and I was feeling very defeated. After a very good and much needed meeting with a friend I was super encouraged by an article he read to me.  Many of you know about Pastor Saeed Abedini.  He is an Iranian American Christian pastor imprisoned in Iran.  He has been incarcerated now for over two years.  He wrote a letter to his daughter for her 8th Birthday.  In the letter he talks about how he recognizes that this must be so hard and confusing for her.  He goes on to say that she is probably asking Why? Why is daddy in prison? Why are they doing this to him?  He says to answer your question you must first understand that it's not about the Why it's about the Who.

This pierced my heart and reminded me once again that it's not about me.  It's always all about Jesus.  Not about the why but about the WHO.  JESUS. Who am I to ask Why? Who am I to question his plan for my life? Jesus took on human flesh, went through more than anyone could bare, and was hung and crucified on a cross for my behalf. Yes I cry and I groan but then I'm reminded of how much I don't deserve but have been given much.  It's not about the why it's about the who. Powerful words.

Thankful for friends who remind me of God's truth.  The only way to get through these hard moments is to preach the Gospel to ourselves and to meditate on his truth daily.  For some of us hourly :) Thankful that he is working out his great plan and that he is sovereign over my life.  I pray that when hard days come again I will remember these truths, put on my battle gear, and fight the good fight.

Wednesday, October 1, 2014

Meeting Update

We are thankful for all your prayers.  We got word today from the transplant team at UCLA.  After much consideration they have decided that Dr. Changs opinions were very valid and raised great concerns.  They are sorry for not consulting him before they met with us but feel it is best that Noah remain on the list.  Our emotions are all over the place.  At the end of the day though it comes down to this.  God is sovereign.  He is the only one in control of what happens with Noah.  He already knows the timing, the donor, and if and when Noah will make it to transplant.  It really doesn't matter the decisions these doctors are making.  I have been resting in that a lot this week as we have anticipated the doctors decision.  Even if he was to have been taken off the list for awhile that list doesn't determine what and when for Noah.  God does.  This is what calms my emotions and helps me to breathe. I have absolutely NO CONTROL.  NONE!!!  I don't have the right answers in this situation.  I do however have a wonderful Father who even before Noah was formed he knew his story.  I will rest in that.  I will cling to that assurance.

Friday, September 26, 2014

Leaning On The Promises Of God

We are constantly amazed at how rapidly things change with our situation.  Last week we were thrilled to hear how well Noah's pressures were in his heart after his heart cath.  They were contemplating taking him off the transplant list for awhile.  We drove down to UCLA and had a wonderful meeting with the transplant team who answered all of our questions.  We walked away feeling at peace with the decision.  Over the weekend we started making vacation plans and getting excited about our family being able to travel and not worrying about "getting the call". Still I found myself not being able to fully  be excited.  I was waiting for the next shoe to drop, the next storm.  It seems over the last three years nothing has been calm for us and I was holding onto this new news very loosely.  I knew that at any moment things could drastically turn for Noah and I think it is just a way to safe guard my heart in this process.  Still as much as you safe guard yourself or prepare it still is hard when the storm comes.

Tuesday we had more sets of doctor appointments. This time Hannah and Noah were both seeing Dr. Chang for heart Echo's and check ups.  At this appointment the storm hit again.  The team at UCLA had not talked with Dr. Chang yet about their decision to take him off the list for awhile.  Dr. Chang was very upset and did not agree with this decision.  He has very strong reasons and after the team heard his thoughts they are taking them into consideration.  On Tuesday a team of several pediatric cardiologists, surgeons, and the transplant team will meet for a round table discussion to discuss Noah's case.  Right now Noah has not been taken off the list but is on an internal hold until this matter gets decided.  I can't even tell you what an emotional battle this has been this week.  On top of all that , Wednesday Noah had a bad episode.  He yelled for me from the other room.  When I got to him he was clenching his chest telling me it really hurts.  It lasted about a minute and he had many little ones that followed.  He started to cry and said he just wants it over with.  It breaks my heart to see him in discomfort.  He is fine and the pains are one of the things Dr. Chang is concerned about because he has had them consistently for the last two years with no improvement and somedays they are worse.

Please pray for this decision.  Pray for our nerves.  Pray that Noah would be ok with the outcome.  It is such a roller coaster ride and we would love to have some calm back. Pray that we would continually be leaning on the promises of God.  Grateful for you all.

Friday, September 19, 2014

Blessings Abound

Well Noah is Officially a status 7 on the list.  This just means he is in-active for now.  Since the news on Monday that this could be a possibility I have had a mixed bag of emotions.  Happy, worried, confused, anxious etc.  I had a ton of questions and not a lot of answers.  When UCLA called on Wednesday and asked if we could meet with the transplant team on Thursday I felt relief.  I was so happy that I would not have to wait a long time to get the answers.  I needed to feel good about this decision and was praying I would feel at peace once we got our questions answered.

We had a wonderful visit with the team.  Dr. Alejos who is Noah's transplant cardiologist is the nicest man.  He is so great at explaining hard things, and not making you feel like your questions are silly.  Believe me we have had plenty of doctors who are not great at these two things and it can be very frustrating.  I love the way he interacts with noah and encourages him to ask questions as well.  Dr. Alejos explained to us that they have seen great improvement in Noah's heart pressures over the last two years.  The medications have been very effective and Noah's pressures are in the normal range.  At this point if he accepted a new heart it would not be any more beneficial to him.  Noah still has Restrictive cardiomyopathy. He will eventually need a new heart.  His heart still does not relax properly and this will eventually lead to heart failure and stroke.  The benefit to taking him off the list right now is to buy this sweet boy some more time.  Transplant is great because it will save his life however only for a short time and transplant comes with lots of dangers and complications.  The longer he can wait the better it will be for him.  We do not know however how much time this will buy him.  He could start to show signs of heart failure tomorrow and need to be re listed or it could be another year or so. He will be closely monitored by the transplant team.
We feel very much at peace about this decision. For right now we are celebrating this unexpected blessing and will continue to give our son up to the Lord trusting in his perfect plan for Noah.

Thank you for your continued prayers and support.

Tuesday, September 16, 2014

Praise God From Whom All Blessings Flow


Yesterday was Noah's heart cath. We got up early and arrived at UCLA at 7:30 ready to check in.  Noah's procedure was delayed by two hours but we kept busy by playing games on the ipad.  Noah was nervous and asked us to pray for him.  Truthfully he wasn't the only one nervous.  We were scared for what the doctors might find when they went in to take a closer look at his heart.  It had been 15 months since his last heart cath procedure.  Finally they were ready to take Noah back.  We gave him a kiss and told him we would be in recovery when he woke up.  Jason and I went to the cafeteria to get some lunch.  We talked about the number of times Jason has had to say goodbye to one of us as they wheeled us off into surgery.  He remarked that it never gets easier and is not looking forward to the day Noah gets his new heart.  I was super tired from lack of sleep the night before.  My body had come down with Vertigo and the drugs that I was taking to help keep the room from spinning were making me loopy.  I wanted nothing more than to find an empty hospital bed and take a long nap. Yep you read that right Vertigo.  I laughed when the day before the nurse told me it could last for several months.  I looked up at the ceiling and said "really Lord?" "Throw me a bone or take me home".  My bone would soon come.  After we ate lunch jason and I went to wait in the waiting room.  The nurse came by and asked if our last name was Lietzau.  She handed me a phone and told me the doctor would like to speak with us.  Let me just stop and say it is torture when this happens because you have no idea what your about to hear.  They have your precious child in an operating room and you are not thinking roses and rainbows you are thinking the worst has happened.  The doctor started with your son is fine and we are all finished.  Then says you know what let me come down and talk to you.  I have no idea what he is going to explain to us but at this point I'm thinking a hospital stay is in our future. Here is the following conversation:


Hi Dr. Alejos.  He stands there with a smile and explains to Jason and I that Noah's pressures looked so good.  He said it's pretty unbelievable but they are in the normal range.  What?? He says, we thought his numbers looked well last year only increasing by one but they are actually better than when he was first listed.  This does not mean that he is cured but they think he could wait a year or two for transplant.  He goes on to say the medications he is on are obviously doing there job and we will just monitor him closely every two months.  WOW!!!  What?? What does this mean???  Well it means that we can't explain his nasty abnormal EKG, and he still has restrictive cardiomyopathy. but the longer he can wait to have a transplant the better for him.   They still need to go over all the results with the transplant team before they make him inactive on the list.  If they do decide to take him off the list he wont lose any of  the last two years of time he has occurred.  When he gets put back on he will still have all that time.  If he got a call tonight though Dr. Alejos said  I would for sure turn it down.  WOW!! This means we will be able to travel and not be stuck close to the hospital.  I asked him about Hume Lake.  Noah has been sad to miss the last few years. He said he had a test they could do to check how his heart handled the elevation.  If he handles it ok than yes he can.  WAHOO!!  He told us he would be in touch and walked away.

We both stood there stunned.  There was my bone.  A mighty big one too I might add. Unbelievable.  We are so happy but know at the same time how drastic things could change in a second. So we want to hold this loosely.   For now we are taking it and are so relieved in so many ways.  Thank you Jesus for this gift. We will keep you all informed as we learn more about what the transplant team has decided and what this will mean for Noah.  Thank you once again for being faithful to pray for us in this long journey.

Ps. Please look pass all my ugly grammar mistakes.  I'm not good with writing to begin with and having vertigo makes it even more challenging :)

Thursday, September 11, 2014

It is well with my soul

Wow!! Time has gotten away from me and I can't believe it has been so long since my last update. We started school and it has taken some time to adjust to our new routine.  We are enjoying some much needed structure and it has gotten our minds off of all the medical jumbo looming over our heads.

  It's been so good for  me to look back at these posts and realize the ups and downs of emotions we have experienced as we have walked this long journey. My last post I was in a weary place and now I'm sitting here feeling relief that God doesn't keep me in that place for long.  Jason and I are coming off of a wonderful week.  We just enjoyed two nights away together just the two of us.  It was a great time of reflection and relaxation.  We were surrounded by beauty and I was able to just sit and recount God's goodness through our journey over the last few years.  It was good for our souls.  Another wonderful thing happened.  The day after we returned our sweet Jonah made the decision to follow and trust Christ.  The Lord has been working in his heart a lot over the last year. He has been asking lots of good questions and has had some break downs as the holy spirit tugs at his heart. Yesterday while I was driving his little sister to class, Jonah began to cry and told me he was ready to ask Jesus into his heart.  I was caught off guard and texted Jason.  Jason told me to move forward as he was convinced the holy spirit was moving in him.  We talked through his understanding of this decision and I got to witness yet another answer to prayer. My boy made the biggest decision of his life. The rest of the day's tasks seemed so insignificant and I found it hard to want to do anything else but sit with my kids and relish in God's goodness.  We are all rejoicing.  I love my boy but will never love him more than his savior and today he got that.  He understands that he is a sinner in need of a savior.  His heart is tender and the weeping comes from understanding the ultimate sacrifice his savior made for him. Glorious Day!!

Yes there are things that still loom over our heads.  There is much pain and uncertainty that is waiting for us with transplant, heart disease, and muscular dystrophy.  However I find great relief knowing that my boys( and one day God willing my daughter) understand that we have a hope that is far greater than anything.  They understand that this is not their permanent home.  One day Jesus will wipe away every tear and right every wrong and we will get the immense joy of spending eternity with our father in heaven.

Sweet friends we are thankful for all of you and ask that you would continue to journey with us in prayer.

Noah- Noah has been doing well but is growing inpatient as the days go on.  He is eager to get his new heart and feel better.  He looks forward to playing soccer and going to Hume again someday.  He has his annual heart biopsy Cath procedure this Monday at UCLA. Please pray for good results and no surprises. No sickness.

Jonah- We are thankful for Jonah's clear results from his heart monitor.  Jonah is doing great and we are proud of his recent decision to follow Christ.  Pray that the Lord would continue to work and use Jonah through our circumstances. Pray that God would continue to keep him healthy and strong.

Hannah- Hannah continues to do great since her surgery.  We pray that she would continue to feel great and for no surprises with her heart.

Jason- Pray that God would continue to help him grow in trust and patience.  As he cares so deeply for his family I pray that God would meet him and shower him with his love and grace.

Melody- Pray that I would not be defeated by my circumstances.  Pray for strength and energy.  Pray that I would be able to avoid respiratory illnesses this season.

Wednesday, July 30, 2014

Oh So Weary

I wanted to give you a brief update on our family and ask that you would continue to keep us all in your prayers.  This has been a looooooong journey and we want to thank those of you that are still checking in and lifting us up in prayer.


Noah-  Monday I dropped Noah off at golf camp and explained to his instructor all about Noah's condition.  A few hours later I get a call that Noah is not doing well.  Noah was dizzy, his breathing was labored, he had rapid heart beats, and was finding it difficult to keep up with the walking on the coarse.  I was super nervous when I got to the coarse. Noah was emotional and crying that he just wanted his new heart.  It was very hot and humid and that alone can do a number on cardiomyopathy patients.  Noah has learned over the last two years to self regulate.  This means he can run around but the minute he feels anything he stops.  This was a situation that he could not do that and unfortunately the instructor was not listening to Noah.  He knew his body needed to stop but the instructor was not letting him.  He will be seen at UCLA tomorrow for a full work up and we would appreciate your prayers.  As Noah is getting more and more fatigued and not feeling great he is also getting inpatient.  He has broken down a few times and wants more than anything to feel better.  It makes me anxious and it breaks this mommas heart.


Jonah-  Because of our family history Jonah sees the cardiologist once a year for a work up.  Since we found out a few months ago that Jonah tested negative for the rare disorder Noah and I share, I was expecting todays appointment to be uneventful.  Well I should have known that is never the case with our family.  Jonah's EKG came back showing some slow abnormal rythmns.  He left the office wearing a 24 hour holter monitor.  Hopefully this is no big deal as this momma is reaching her limit on how much more she can take.

Hannah-  Praise the Lord this sweet girl is doing amazing.  Her oxygen levels were 98 today.  she is not getting out of breath and has more energy than I can handle.  The doctors couldn't be more pleased at this point.

Jason-   My sweet husband carries the weight of this family on his shoulders and it is a heavy load.  Please pray that God would give him the strength he needs to endure each day.

Mel-  I recently went to UCLA for a swallow test.  We found out that my tounge and swallowing muscles have been affected by this wonderful MD disease.  It is mild now and nothing I can do except eat small, slow, and often.  I will be having pulmonary testing next to check my breathing.  The danger with this disease for me is that eventually it could effect my respiratory muscles.  Other than that I have been focusing on trying to do things I have always wanted to do before this disease progresses any further.  We recently had fun renting segways, and I even tried horseback riding for the first and last time.  Hey some things just aren't for everyone :)

We trust in God's perfect plan but friends there are days when we are weary. Days when the journey seems long and we don't have much steam to press on.  Pray that we would be obedient to press on in faith, that we would be consumed by his love, and that we would experience his peace that transcends all understanding.