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.




Sunday, July 27, 2014

Angel Game #3

Thank you so much for those that came out to support us at the Noah's Heart Angel game.  We had a great time.  It was a fun night but I  was not prepared for the flood of emotions that came over me.  It started when Uncle Josh told Noah he was going to get to put the game ball on the pitchers mound.  Noah was excited and super thankful.  He hugged his uncle and said thank you three or four times.  I held back the tears as I watched him. It was difficult being faced with my physical disabilities and realizing the progression from the last two games.  Next was seeing Noah have his moment on the field and realizing that on the same field last year our close friend Geoff shared in a special moment with us between his cancer treatments.  Geoff was the healthiest he had looked in months and so happy having a special date with his bride.  He died months later and I miss him dearly.  The next moment came when we surprised Noah with a special guest.  His co-op teacher of three years Mrs. Barneson came.  When he saw her his eyes lit up.  He hugged her tight for what seemed like 20 minutes and began to cry.  She holds such a special place in his heart and he was overcome to see her.  Also realizing we have done the Angel game for three summers now and we still haven't gotten the call was hard.  As much as we try to be patient it is hard to wait for something we know has to happen in order for our son to live.  It was so great seeing Noah have a blast with his buddies, the Angels won, and the fireworks were awesome.  A great night to remember for sure.  Thank you so much Josh and Jamie for giving Noah an incredible three games that he will remember for a lifetime.

Tuesday, July 1, 2014

Grateful

After only six days in the hospital, Hannah got to come home yesterday. It felt so good to have our family back together and in our own beds.  It has been amazing to see how fast this sweet girl has recovered. She is doing amazing.  She continued to blow away the doctors with her progress each and every day.  Hannah went in Tuesday morning for open heart surgery and the placement of a permanent pacemaker.  She now has a conduit shunt helping to supply blood and oxygen to her heart.  Her oxygen stats went from being in the low 80's to now 98-100.  We have noticed a significant increase in her color and look forward to seeing her run around without getting winded.

It has been an emotional six days for us.  We spent time with nurses and doctors who were all apart of saving our girls life four years ago.  Her hospital room was directly across from the room where we heard doctors tell us she wasn't going to make it.  The same room where they worked on our sweet girl for three hours, pumping her full of meds to keep her stable.  We spent time with another family from our church who had been at CHOC for days with there daughter who underwent brain surgery.  We had an interaction with a family I had met by chance weeks ago at Dr. Changs office.  She was waiting for a heart/lung transplant for her one month old.  Her daughter had gotten influenza and was in the CVICU.  Our hearts were burdened for this family who felt hopeless.  We prayed for another chance to talk with them and were disappointed when they were discharged the next day.  Happy she was well enough to go home though for sure.  You see so much pain and despair when you are in the CVICU.  It made us that much more thankful and aware of our need for a Savior.  I don't know how people walk this life without Jesus.  I chuckle as I look back and see how much better it is to have Hannah and my surgery behind us. It wasn't how I saw things going but once again God's plan is ALWAYS the best plan.  I feel hopeful as we anticipate Noah's transplant that we will someday settle into a new normal.

A few days before Hannah's surgery I received a call from a sweet girl Samantha.  I did not know her but she explained that she worked for Noah's orthodontist and had recently heard of our family's story.  The Lord had put our family on her heart and she felt extremely burdened to do something.  She asked if she could meet with me to hear more about our story.  I told her Hannah was getting ready to have surgery so we didn't have time before.  I told her she was welcome to stop by the hospital since we had anticipated a long 14 day stay.  Samantha had decided to come by Monday.  We were surprised to hear we were going home that Monday so Samantha met us at our house instead.  This sweet girl brought us dinner and a beautiful gift basket.  She sat and listened to us tell her all that God had done over the last five years.  There were tears and smiles as we all recounted the beautiful ways God was at work.  we got to hear Samantha's story and her struggles and it became apparent that God was using her in big ways to impact his people.  We are so thankful for a new friend and the way that God encouraged her to reach out to us.  Don't you just love the way God works.  I don't make this stuff up people he is constantly showing himself in beautiful ways.

 Hannah is still recovering and we have a ton of appointments over the next coming weeks.  Please continue to pray for her. that she would remain stable and continue to heal.  Thank you all for your outpouring of love to our family this past week.  We are thankful and have been so encouraged by it.

Wednesday, June 18, 2014

Hannah's Surgery


Hannah’s Surgery

Today we met with Hannah’s surgeon Dr. Gates.  I have to admit it was a little overwhelming to sit across the room from the man who played a big part in helping save our little girls life four years ago.  We discussed the process of the Fontan operation Hannah needs to have and what it would entail.  He mentioned that it should be done this summer and we told him we would like to schedule it as soon as possible.  We explained that Noah was expecting a call for a heart and they could not take him off the list for this surgery. He looked at his books and said he could do it this Tuesday.  So Tuesday it is.  This will be an open heart surgery where they will go in and put in a conduit shunt. We are feeling many emotions right now.  We have dreaded this surgery for the last four years but also know how necessary it is. We are eager to get it behind us.  We are fearful of getting a call at the same time and having to split ourselves up to care for two of our children across town from one another.  We are scared of the actual surgery, we are concerned how Hannah and the rest of our kids will process this all.  Concerned how I will keep up physically and so much more.  We do know and are confident though that God has been in control and has known the timing of this all.  He will give us the strength we need to face whatever comes our way.  So thankful we do not have to walk this alone. The song thats ringing through my mind tonight is   “His power Will Prevail.” The lyrics are below.  Please continue to lift our family up in prayer.  We would love more than anything to be a light at CHOC where so many people are experiencing darkness.  Thankful for you all.





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