She Continues To Amaze

For those of you who have just started reading our blog this year.  Our precious blessing who we adopted a few years ago, amazed the doctors who gave her a 30% chance of survival when she escaped death, and left the hospital five days after having major heart surgery.  The doctors were scratching there heads as they tried to figure out how her arteries had opened overnight.  It was a beautiful Miracle that the Lord allowed us to witness two years ago.  Since then she has continued to do great passing each and every milestone.  We knew she was gonna need another open heart surgery (the fontan) between 4-6 years of age so this heart cath she just had done did not come as a surprise for us.  The timing however was not the greatest. Ha! However the results of her heart cath did.  Before she went in for this procedure, the surgeon shared that they would most likely need to do some ballooning or put in a stent to help open up her pulminary arteries.  She talked about possibly needing to coil several extra blood vessels and checking her pressures.  I have to admit I was a nervous wreck.  The last time we went through this she was so fragile and she went into heart failure hours after this procedure.  I was praying that she would go in and amaze the doctors once again.  I was stunned when the doctor came out and said she looked great and that the pulminary arteries looked amazing.  They did not need to touch them, said her pressures looked great, and that they just needed to coil two of the extra blood vessels.  Could not have asked for better results.  This girl is a fighter and has endured a lot in her short years of life.  I love her to pieces and she continues to amaze us all the time.  I'm so blessed to be her mommy and marvel at all that God has done to save her precious life.  We will see Dr. Chang on Tuesday and discuss the timing of her upcoming surgery.  No doubt she will pass that one with flying colors as well :)  please continue to pray for the timing of her surgery as we wait for it and Noah's future transplant.  We are confident God has it all worked out but unfortunately we are just like those silly Israelites and forget every so often and worry, worry, worry.  Just like them we need to be bopped on the head to remind us once again.  He's never failed us.  Ha!  Thank you all for your prayers and encouragement and we apologize for not getting the chance to respond to each one but we read them all and they are so encouraging to us.

Keeping it real folks

I have tried for a few days now to write a post and have found it very difficult.  It is hard to describe the range of emotions I have been feeling since Noah got listed.  It was something we had been striving to get to.  I mean after all it is what is needed and necessary to save our sons life. It is hard hearing my son say his heart hurts time and time again and to see him get weaker.  It is one step closer to him feeling better.  It also brings about a lot of worry that at any moment we have to be prepared to get a call that will ultimately tell us it is time for the biggest , riskiest, life altering surgery anyone would ever have to face.  It also means someone will be mourning a loss so that our son can gain life.  I think about the long car ride to the hospital and the final moments before they take him into surgery.  I think about the 15 different medications he will be on afterwards.  I think about the countless trips to the hospital that will follow his big surgery and the fact that he will most likely have to go through this a second or third time in his life. I think about all these things.

Then I think about how lucky I'am that God has allowed me to be his mom.  I think about the fact that Noah ultimately belongs to the Lord.  I remember God's goodness and how faithful he is to show himself in beautiful ways.  I remember God's word in 2 Corinthians that says for this light and momentary affliction is preparing us for an eternal weight of glory beyond all comparison.  I remind myself of the ways God is deepening his relationship with Noah during this time and all the ways God is working in people all around us.  I'm thankful for the ways he is deepening my faith and refining me for his Glory.

He is so faithful to give me encouragement when I really need it.  Moments ago I got this email and it brought me to tears.  I love being able to share these things with Noah so he can see what the body of Christ looks like.

 It has been weighing heavily on my heart to contact
your family. I am from Monterey California. A little more up north from
where you are. I work as a server in a restaurant in Carmel Valley.
Anyways, I was serving and doing my daily duties as always....
When I couldn\'t help but notice a ladies bracelet that I was serving. I
saw that it said \'Jeremiah 29:11\' I then complimented her on her
bracelet....and told her that was my favorite verse in the bible. I asked
her where she got her bracelet and that is when she flipped it over and
showed me the website, also explained Noah\'s story to me....I was so
touched. I promised to pray, and also asked her for the website
information....I asked if I\'d be able to get a bracelet on the
website....she then took her bracelet off and gave it to me. It made me
cry...I was so thankful. I will pray every single day for Noah. He has
touched my heart. Gods grace is sufficient. I feel blessed to share
Noah\'s story, and spread the word. I truely  believe in the power of
prayer....and from my little town to yours....your family will continue to
be in my prayers!!
Meghan

Thank you Meghan for being apart of Noah's Journey and for linking arms with us in prayer.  Thank you to the rest of you for allowing me to wear my heart on my sleeve.

His Grace is Sufficient

We are so incredibly grateful to everyone who showed up to the Chick-Fil-A fundraiser last night.  The turnout blew us away!  Obviously the purpose of the event was to raise funds to Noah’s upcoming surgery expenses – and it did - but last night our family walked away encouraged and strengthened especially as we think about the difficult days ahead.  Last night Melody and I went to bed praising the Lord with tears in our eyes amazed at how the Lord poured out His blessing through all of you.  The amazing thing about last night is that it was just one of many examples of how we have seen the body of Christ come together.  You all have been teaching us so much about what it means to stand shoulder to shoulder, encouraging one another to “press on toward the goal for the prize of the upward call of God in Christ Jesus.”  

As I thought about last night there is another way that God has been continually encouraging our family during this time that I think we so often overlook or miss or at least I have in the past.  For me it brings such encouragement to see so many people living their lives faithfully unto the Lord.  I am more convinced than ever that the way we live our lives is a testimony that God is using to mutually build His church.  Not that we are perfect, but that in light of Gods Grace that we can confidently claim 2 Corinthians 12:9 that “My grace is sufficient for you, for power is perfected in weakness.”  Most gladly therefore, I would rather boast of my weaknesses so that the power of Christ may dwell in me.  I can not think of a time in my life that I have felt more weak, but at the same time seeing the works of God more clearly displayed all around us.  I truly have nothing to boast in except the power of Christ.  This time has been a reminder for me that I can bring nothing to God – not righteousness, goodness our skills and abilities.  What do we have that has not been given to us?  Romans 5 says, For while we were still helpless, at the right time Christ died for the ungodly.  Then Romans 5 goes on to say, that “God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us.”

I probably am writing this blog post as much for my benefit as anything else – it’s a reminder that God first reached out to me in my sin and helplessness.  But I also share it because this is the core of the gospel and the answer to a question that Mel and I have been asked many times in the past few months…”how do you guys do it?  You have so much going on in your life.”  My answer is simply that “Gods grace is sufficient”     

Please pray for us as Noah has an appointment at UCLA with one of the Cardiologist and a Neurologist.  Right now we are so focused on the urgent – which is getting Noah a new heart but with some updates to Melody’s diagnosis the doctors anticipate that Noah may also have Muscular Dystrophy.  We are hoping to get more information tomorrow.  Also please pray for Jonah.  He was tested as well for the gene mutation that was discovered in Melody.  We obviously hope his test turns out negative

So Much Going On

I'm sorry it has been awhile since our last post.  For more up to date info on Noah you can always check the website at www.noahsheart.org .  I have been trying to get into a new routine with the kids back to school, and all of us juggling doctor appointments.  It has been tricky but we are all making it work.  Jonah is doing soccer as well.  We might be nuts by doing that but we wanted this sweet boy to have some well deserved attention and something of his own right now.  We are so worried that he will get lost in all that is going on with the other two blessings and we don't ever want him to feel less than.  A lot has been going on.  This past weekend a wonderful soft ball team SO Cal Wicked held a tournament in La Habra.  They wanted to help our family out in some way and boy did they deliver.  The wonderful girls went around collecting pledges for every hit they made, they had bags all over the field for recycling and a table set up for donations and raffle.  Noah felt like a celebrity the whole weekend as he hung out with the girls and spotted his picture on a couple dozen posters plastered all over the campus.  The girls had special shirts made up with his picture on them and he even got to do the coin toss for one of the big games.  We cant thank you enough Dave and all you girls and a special thank you to Auntie Jamie and Uncle Josh who worked a booth both days in the blazing heat.  what an incredible event.

Last Saturday we met with Dr. Chang to discuss Hannah's upcoming surgery.  He wants to do a heart Cath to see what's going on and how her pressures are doing.  This is not a fun test.  She has to be put out and stay overnight for observation.  Her heart is still very fragile so anytime they have to do anything it poses a big risk.  The last time they did a heart cath she went into heart failure hours later and we almost lost her.  Not sure it was related but none the less its scary and this momma will not be leaving her side.  It is Scheduled for September 27th at 8:00a.m.  We would appreciate your prayers.  if all looks good they will try and hold off on her surgery for six months to a year.  We are trusting the Lord for the perfect timing for both her case and Noah's.

Noah is doing good.  At his last appointment they ordered a new medication that will help strengthen his lungs and we are waiting to get it in the mail to start it.  We are thankful for this medication because someone with Noah's condition poses a threat to damaging his lungs causing him to need a dual heart/lung transplant.  We do see him getting more tired.  This is to be expected and it makes him long even more for his new heart so he can feel great.  He really has handled everything well and is such a brave little guy.  We are very proud of him.

It has been incredible to see the community and complete strangers give of there time, money and resources.  We feel beyond supported and loved by all of you.

Quick Update

I'm having a difficult time tonight expressing in words how I'm feeling.  We are certain Noah will be listed in the next day or so.  We also know from looking on the UNOS site that it could pontentialy be very quick like hours from him being listed to days to months.  You would think I would be happy about this news. I really don't know what to feel.  The reality of it is we still have another child who also needs heart surgery that we have to work around as well.  The stress of trying to work out the timing of it all can be daunting.  I have realized in these times how much I like to be in control and am certain God is teaching me some valuable lessons here.  At the doctors today they put Noah on another medication.  This one will help his lungs and will also help after transplant cut down on the amount of time he will spend on the ventilator.  They also did some xrays and drew more blood.  Everyone has been so great and helpful and we feel like we are getting the best care.  It is a good feeling.  I know God already has this all figured out and we are daily putting our trust in him and putting one foot in front of the next.  He has been so good to give us strength when we need it and amazing grace in those moments when we don't deserve it.  Please continue to pray with us as we look ahead and put our trust in the timing of these events. Please be sure to check the website for weekly prayer requests and other information.  www.noahsheart.org