Wednesday, November 19, 2014

Thankful

Thanksgiving is fast approaching and we have so much to be thankful for:

 Our sweet boy has made it almost three years since his first diagnosis in January 2012.  He has been on the transplant list for over two years now and has remained hospital free.  I can't tell you what joy it brings me to see some of you still faithfully wearing your bracelets.  Eric Twisselmann I was brought to tears the other day when I saw you on stage sporting your faded bracelet. I love how worn it was.  It was so faded the words were washed away but I could still tell what it represented and was so beyond grateful to see the support. I know so many of you are still so faithfully praying and we can't thank you enough.  We are so thankful Noah has remained well.  His pressures are stable for now but we don't know for how long so we celebrate today and the last few years knowing things could dramatically change tomorrow.  Really it's how we all should be living, thankful for today not knowing what tomorrow may bring.  Can I get an Amen?  Our sweet boy still needs a new heart but only God knows the timing.  He remains on the transplant list and we remain hopeful that it's in God's control and not our own.

I'm also thankful for the gift of driving and for the muscles in my body that still work.
As this muscle disease continues to progress it brings me more and more thankful for an amazing husband who carries his bride and lessens her load, supportive friends, family, adaptive equipment, and God's grace.

I'm thankful for our sweet girls successful surgery.  She is doing amazingly well and there have been no  surprises.  She loves that her momma has a pacer just like her.  She has regular check ups and positive reports.  So thankful.

Last we are thankful for all of you that would care enough to read our words and receive our updates.  It means so much to us.






Give thanks in all circumstances; for this is the will of God in Christ Jesus for you. (1 Thessalonians 5:18)

Sunday, November 9, 2014

Bittersweet

Yesterday our sweet girl turned six.  It was a birthday to remember.  She has been in love with horses for a while now.  She was super sad when Jason, the boys, and I went horseback riding a few months ago.  She did not meet the age requirements and was unable to join.  She wanted a horsey birthday so mom began the hunt  to find someone who had a pony or a horse.  A sweet friend I grew up with had a connection to a ranch close by.  The people had never done a birthday party before.  After hearing about our family from our friend they were willing to host a party for us at their ranch.  This ranch holds several horses including ponies, a pig, chickens, and several peacocks.  It was the perfect place.  The hosts went above and beyond and truly blessed our sweet girl.  It was such a joy seeing her ride a horse for the first time. Hannah will always remember this special birthday.

At the end of the day looking back through all the pictures my heart began to break for Hannah's birth mom.  I think and pray for her often when she comes to mind.  She always comes to mind on this day in particular. We are so blessed to have Hannah's birthdate.  Since children are abandoned they don't often know a birthdate and are given one based on weight and other criteria.  Her birth mom felt like her daughters birthdate was significant or she wouldn't have taken the time to pin it to her clothing.  She cared enough to let me know and I will forever be grateful for that and so many other things.  I can not imagine the loss she must feel not knowing if her sweet daughter is alive and well. Oh how I wish she knew what an incredible gift she has given us and how brave we think she is for leaving her in an elevator of a hospital in hopes of her getting the care she needed.  I wish she knew how healthy and beautiful she is and how much we adore her.

 Lord please wrap your arms around Hannah's birth mom and give her the love and comfort that only you can give.  Lord I pray that if she doesn't know you already Lord I pray that you would make yourself known to her.  Lord thank you for choosing us to be Hannah's parents. Lord I pray that she would grow up with a desire to love and serve you all her days.  I pray that she would put you first above all things.  Grow in her a compassion for the fatherless, give her a gift of humility, patience, and self worth.  Thank you for saving her life and for continuing to heal her body.  Thank you for the fighter that she is and that you made her perfect created in your image.


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 :)