January 2016 – Where has the time gone!

My goodness, how time has flown.  It has been a little over four years since our last update, but I am happy to report that Hannah is still doing marvelous!  Hannah is now 9 years old and THRIVING in every aspect of her life.  She has grown into an active, smart, self-motivated, and absolutely hilarious kid!

Hannah is super organized, and loves everything to be in its place (she did NOT get that from me).  She LOVES to collect things, from mini-figurines to rocks and cards.  Her latest craze is collecting Shopkins, which… don’t get me started on those things.  I just wish I would have been the one to invent these silly “grocery people” that probably cost about $0.00001 to make, yet sell for $3 per blind bag.  She also loves building things, from virtual Minecraft worlds and Lego sets to small sewing projects.

Hannah is a very hard worker, putting her schoolwork first.  She consistently brings home straight A’s on her report cards.  She is really into gymnastics, and anywhere she goes she is doing handstands, cartwheels, and front handsprings.  She is also quite capable of being an avid runner.  Twice a year her class participates in a mile run at her school, and I always tag along and run with her.  We always say that we’re going to “train” for the run, and of course, that means we run a little bit the night before (probably not the best training regimen).  The last time we “trained,” we ended up jogging almost 2 miles without stopping.  Needless to say, we were both incredibly sore the next morning and didn’t do nearly as well in the mile run.  But we did complete it under 12 minutes, which I think is pretty awesome.

In terms of her heart condition, Hannah still has AET (ectopic atrial tachycardia), but it is being managed very well with Flecainide and Propranolol.  She has no physical limitations of any kind, and as I’ve described, she is quite active!  She takes her medicine like a champ, and loves to assist the nurses whenever we go in for her annual checkups at the cardiologist’s office.  Our last post mentioned a possible meeting with the electrophysiology team at Ochsner, but that never happened.  I honestly think we’re still in the “it’s not broke, don’t fix it” phase of managing Hannah’s arrhythmia, and we are very content with that.  This little concoction of meds has been fantastic with no side effects, so if Dr. Brumund is happy, we’re happy.

I’m in the process of getting the website going again after switching hosting providers, and by now the website was in desperate need of a new look.  The main headline of the old website was “Expecting a Miracle.”  Of course, we know that we have received it and we thank God every single day for healing our precious daughter!  I thought it was time to revive the website and transition it into a testimonial site to show off what God has done for us, and to give hope for others going through a similar situation.  Over the next few weeks I’ll be adding more pictures, and maybe I can even convince Hannah to help with the blogging duties!

I cannot begin to thank you enough for all the prayers you have offered for Hannah and our family.

Update – 8/23/2011

This past Sunday was a very special day. During the 9am service, after an incredible worship experience, Pastor Dino asked me to share Hannah’s story. Delynn led the entire congregation in an incredible prayer for Hannah, asking God for her complete healing. We are so blessed to be in a church who is standing with us in prayer for Hannah and her heart condition! I cannot brag enough about our pastoral staff and about the spiritual and emotional support we’ve received from them. Words cannot express how truly thankful and grateful we are for you!

Hannah did another holter monitor on Friday, and I turned it in Monday morning. Tuesday morning, we received the following from her cardiologist:

“Wow. So much better. Zero SVT. I mean none, nada, nil. Peak HR 133.”

PRAISE GOD! Not only did she not have ANY sign of arrhythmia, but her peak heart rate had dropped by 100 bpm! God is so faithful! I knew the results would be good, since we noticed an immediate increase in her appetite and energy level after starting the Propranolol, but this is just OVER THE TOP GOOD NEWS!

Dr. Brumund has sent this holter, along with the others, to the electrophysiology team at Ochsner in New Orleans.  At some point they will want to meet with us and discuss our options regarding ablation. The great thing is that her current meds are working perfectly, and her ventricular function will continue to be excellent, so there is no crisis forcing us to make a decision immediately. If we are to go through this ablation procedure, we want to make sure she’s healthy, and that the team of doctors performing the procedure are comfortable with the entire situation.

I’ll keep you all posted as soon as we know anything else. In the meantime, praise God for what He has done and continues to do! And please keep Hannah in your prayers. We know that God is not through yet! I cannot wait to see what He has in store for her! What a powerful testimony she already has! Lori and I both feel like God is telling us to be patient and keep relying on Him. So we will! And there will be victory in the NAME of JESUS!

Update – 8/16/2011

Hannah’s cardiologist called me today and relayed the bad news that her Holter monitor results were not good.  She had over 2 hours of atrial tachycardia, with peak heart rate of 232.  So the increased dose of Flecainide did not correct the issue.  We were wondering what was taking so long to get the Holter results back, and it was because he was consulting with the electrophysiology team from Ochsner about a possible ablation attempt.  Success rates for ablation are VERY good (>80%).

So the good news is that overall she is very healthy.  Her ventricular function is excellent, so it’s not like we’re having to deal with this in addition to congestive heart failure or poor ventricular function.  We knew we would be going down this road eventually, after realizing that she had not outgrown the arrhythmia a few years ago.  Medication can and will continue to keep the problem under control, but it will only control the problem, not correct it.

The main electrophysiologist at Ochsner is out of town this week, so early next week Dr. Brumund will be speaking to him and formulating a game plan.  At some point Lori, Hannah, and I will go down there to meet with the team and discuss our options.  For right now, the addition of Propranolol should help keep both her rhythm and rate under control until the ablation procedure is performed.  It will take a few days for the Propranolol to reach steady state in her blood stream, so we will do another Holter monitor on Friday.

Please continue to pray for Hannah, that God would totally deliver her from this arrhythmia!  Pray that He will give us wisdom and guidance so that we can make the best decision for our little princess.

August 2011 – Starting Kindergarten!

Can you believe it, Hannah is 5 years old!!!  She is growing up so fast.  If you hear her talk, you would think she was 25 years old.  She is already so grown up for her age.  I’ve never heard a 5-year old communicate so well!

It’s been a while since we’ve updated the site, so let me catch you up.  Last summer, she was completely weaned off the amiodarone.  Unfortunately, she went back into her atrial tachycardia, so she was admitted to OLOL to get on telemetry while Dr. Brumund started her new Flecainide treatment.  There are several benefits of being on Flecainide as opposed to Amiodarone — firstly, Flecainide doesn’t mess with your thyroid at all.  So she finally has a FULL head of HAIR!!!  The other benefit to Flecainide is its half-life, which is only 8-12 hours (rather than Amiodarone’s 90-day half-life).  Which means, if Dr. Brumund decides that ablation is the best option, all we have to do is stop giving her Flecainide and go in to the cath lab after only a few days (rather than waiting 3 months with Amiodarone).  So she has been on Flecainide for the last year, has gone through several Holter monitors with outstanding results!  She still has a few recurring episodes of SVT, but the rhythm is sinus, so that’s not too big of a deal.  The important thing is that she has had no more episodes of atrial tachycardia!

That is, until last week.  On Thursday, she had a checkup with Dr. Brumund.  She had labs drawn (which she was not a big fan of), an EKG, ECHO, and a Holter monitor.  Unfortunately, the Holter revealed some episodes of atrial tachycardia, so Dr. Brumund has increased her dose of Flecainide to 60mg from 40mg.  Her levels showed that she is still on a moderate dose of Flecainide, so he is confident that the increased dosage will help keep the atrial tachycardia under control.  So on Tuesday, she will see Dr. Brumund again, do another EKG and Holter monitor, and get more labs drawn to check Flecainide levels.  Please pray that the increased dosage keeps her atrial tachycardia under control!  We know that God is STILL totally in control, and we know that in the end HE will prevail over this heart condition!

If the results of the next Holter still show signs of atrial tachycardia, Dr. Brumund may put her back on Propranolol, a beta blocker that helps control rate, and works well with Flecainide to control ectopic arrhythmia.  Or, he may suggest that we go ahead and try a round of RF ablation, which has a 99% success rate.  Either way, we know that our God is still on the throne, and has His hand on this precious girl!

In other news, Hannah starts KINDERGARTEN on Wednesday!  We cannot believe that this little miracle is so grown up.  She continues to amaze us in every way.  Nothing gets past her (which is a blessing AND a curse).  She has the most remarkable memory of any child I’ve ever known.  Of course you always brag about your own kids, but seriously, Hannah is so smart it’s kinda scary…

So anyway, that’s the latest on Hannah.  I will try to keep her website more up-to-date than I have.  And I will post pictures soon, I promise!  Please continue to pray for her complete healing!


February 2010

Hannah has REALLY grown up in the past year!  She is an absolutely amazing little girl.  She is quite strong-willed!  We’ve gotten in trouble in preschool a few times, because she is so independent and she wants to do her own thing.  So we’ve been really working on following directions!  She has improved leaps and bounds, and hardly ever has any behavioral issues anymore (at least in preschool).  We’re still working on following directions at home.  🙂

Her problem solving skills are simply amazing.  She has such focus, such determination, even with the smallest of things.  Her latest challenge has been to figure out how buttons work.  She will sit on the floor for an hour buttoning and unbuttoning her shirt.  She is infatuated with the moon.  Every night, I’ll take her outside and we try to find the moon and the stars.  The first star we see, we break out and sing “Twinkle Twinkle Little Star”.  Such priceless moments shared with daddy!

Her last checkup in February was the best yet!  Her shortening fraction has increased to 41%!  PRAISE THE LORD!!!  Her cardiologist wants to go ahead and begin weaning her from her meds again.  This time, it will be over the course of 6 months.  Last time we tried to wean her meds it didn’t work out so well — we ended back up in PICU getting back on Amiodarone.  We’re praying that the more gradual weaning process will be more successful.  Of course, it doesn’t matter if it works or not, we know that God has a plan and a purpose for her life that we WILL see come to pass.  We’re a month into the weaning process.  She’ll wear a holter monitor sometime in May to make sure she’s not having any arrhythmia breakthroughs.  All her enzyme levels and bloodwork have continued to be great.  There are a couple of enzyme levels that are slightly elevated, but nothing serious enough to alter her medication or treatment.  Thank you Jesus!

Another amazing thing about Hannah’s story… When Hannah presented with Dilated Cardiomyopathy, we were told that the only two things it could be were a virus that attacked her heart or a genetic anomaly.  Nobody ever thought it could be caused by an arrhythmia.  Since Hannah’s diagnosis with the arrhythmia, her cardiologist has caught 3 MORE CASES of Dilated Cardiomyopathy caused by an arrhythmia!  So instead of spending months in PICU potentially waiting for a heart transplant, these babies were able to be immediately put on the same Amiodarone/Propranolol medication, and they all went home within a week!  God is using Hannah to save the lives of others.  We are seeing Hannah’s miracle multiply before our very eyes!

God continues to amaze us as we believe for her TOTAL HEALING!  Please pray over the next few months that the weaning process will continue to be successful, and that the arrhythmia will be GONE FOR GOOD!!!

February 2009

A lot has happened since I last posted.  I apologize for not keeping up with Hannah’s website as often as I should.

Sadly, Hannah’s baby brother or sister will have to wait until 2010.  At eight weeks, Lori and I found out that we had miscarried.  We’re not sure why this happened, but we are 100% sure that God is faithful.  Whatever the reason, we know that He has a plan and a purpose, and He will use this situation for His glory.  “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” Romans 8:28 (NAS)

Hannah continues to grow and is looking more and more like a “big girl.”  Everyone who comes in contact with her can’t get over her politeness.  She just loves everyone so much.  She has the biggest heart of any two year old I’ve ever met.  She is doing great on her two medicines, and we don’t go back to the cardiologist for another two months.

I just finished watching the “Mending Hearts” special on WAFB, and even though we are used to seeing all these kids and know what it’s like to have a child with a heart condition, it still brought tears to my eyes.  I cannot fathom how blessed we are.  Out of all the kids in the special, I am pretty sure that Hannah is one of the only (if not THE only) child who has not undergone heart surgery.  We serve such an incredible, faithful God.  He has blessed us with the best pediatric cardiologist team ever.  This special does such a great job of informing people what it’s like to have a child with heart issues and the incredible things that medical technology can do for them.  If you missed it tonight, I strongly urge you to watch one of the many replays listed here (http://www.wafb.com/Global/story.asp?S=9867789).  Many thanks to the Jindals, WAFB, Pediatric Cardiology Associates, and all the underwriters who made this story possible.

Thank you all again for all your continued prayers for Hannah.  It’s amazing to think back, look upon our journey, and see how God has been there every step of the way, putting the right people in the right places at the right times.  He deserves all praise!  We are more than confident that Hannah will one day no longer have to take medication for her heart, that she will be completely and totally healed.  Thank you all so much for your prayers and support.

Lastly, please pray for these precious twins, Kate and Cohen Witmer.  I went to high school with their mother, Lindsay.  Shortly after birth, Kate was diagnosed with bacterial meningitis and has extensive brain damage.  On top of that, both Kate AND Cohen ended up contracting RSV.  Cohen is doing better, but Kate really needs our prayers.  Lindsay and Eric need a miracle for their little girl just like we did with Hannah.  She is about to begin some experimental Hyperbolic treatments which their insurance will not cover, and Lindsay and Eric are concerned that due to the extended stays in the hospital their health insurance for Kate will soon run out.  We know better than most that God can do wonders — we need to wrap this family up in prayers!  We are expecting God to do amazing things to heal this precious girl and to give her an unbelievable testimony as she grows up and becomes an incredible woman of God!  They have a CaringBridge site set up for her at http://www.caringbridge.org/visit/katecohenwitmer.  Let’s stand with this precious family and expect God to completely heal Kate and Cohen!


Christmas 2008

It’s been almost 2 years to the day that Hannah was flown to Ochsner in New Orleans with a severe case of Dilated Cardiomyopathy and congestive heart failure.  It’s been 6 months since our last emergency trip to the PICU.  She had a cardiologist appointment this past Tuesday, and when we showed up, we were informed that he didn’t even need to see her for another 3 months — her appointment must have been a mistake.

God really convicted me tonight.  We’ve been so caught up in our routines, going about our busy lives that we don’t stop to remember that month at Ochsner and the journey that ensued.

There was so much uncertainty about her condition.  When we first arrived at Ochsner, we were told that “she needed a new heart” — after all, that’s why we were sent there.

It wasn’t until March 2006 that Hannah’s heart began to show irregular rhythms.  It wasn’t until April 2006, our third PICU visit to Our Lady of the Lake PICU, that the doctors realized what was going on, that this arrhythmia had caused everything.  And to think that while we were at Ochsner we were praying that it was viral, not knowing that the majority of the time viral DCM is diagnosed, it results in transplantation.

So as I sat on the bathroom floor tonight and bathed my now 2 1/2 year old miracle, the memories all came flooding back.  I will never forget the Christmas lunch we had in the cafeteria, or scouring New Orleans for a restaurant open on Christmas night.  Now, as she is learning her manners, saying the alphabet, counting to 15, reciting the planets, and reading the library of books that she has memorized, I am reminded that in a hospital somewhere, a young couple is hovering over their first child in PICU, unsure about what is happening and scared out of their minds.  I am also reminded of God’s faithfulness, compassion, and love — and His gentle whisper, “Do you trust Me?”

This Christmas, let’s give thanks for what we have.  Let’s be reminded of all the things we take for granted — the little things that the majority of the world’s population can only dream of.  Let’s pray for the families who will be eating Christmas dinner in a hospital cafeteria.  We are simply blessed beyond measure, and there’s not one family who wouldn’t give it all away in order to save their little girl.

Thank you so much for your continued prayers for Hannah.  We love you all, and wish you the merriest of Christmases!


Stay tuned for more information about Hannah’s baby brother or baby sister, due to arrive in August 2009!  YAY!

2 Years Old, New website!

First, we have to apologize for not updating Hannah’s site for so long. It’s amazing how life just comes at you from every direction sometimes. As you’ve probably noticed, Hannah has a new website! I’ve been working on it for quite some time, and it’s still not finished. All the prior guestbook entries still need to be migrated over, as well as some pictures. I will try to get those (and new pictures) uploaded to the site soon.

Hannah has had a very eventful summer. Her doctors decided to wean her from all medication in the middle of May to see if she had outgrown her arrhythmia. You never know until you try, right? A few weeks after she was completely weaned, she started having trouble. She woke up one day and walked from room to room, lying down wherever she went. That was definitely not normal, so we brought her to the doctor for an EKG. Her heart rate was 258…not good. We were told to go straight to PICU where they would get it under control. We knew this was a very real possibility, so we were prepared and knew what signs to look for.

As soon as we walked into the PICU, Hannah was given an IV, and the doctors began trying to convert her rhythm back to normal. After unsuccessful attempts with a bag of ice on the face and adenosine, she was given amiodarone through the IV which finally brought it under control that first night. We stayed one more night so they could monitor her, and we were sent home. So we’re back on oral amiodarone and propranolol for the foreseeable future.

A few weeks later we had a checkup with her cardiologist. An ECHO showed that this episode did not negatively impact her ventricular function — she bounced right back and is still doing great! Praise God!!! We are so blessed to have such an incredible team of doctors and nurses that care for her. I cannot begin to describe how awesome these people are. They still cannot believe this is the same heart that looked so bad a year and a half ago.

Episodes like this always help us refocus our attention on God and His plan for us. Through it all, we know that He is in control. Statistically speaking, 30-35% of pediatric patients outgrow AET and need no maintenance medication. Hannah has not outgrown it yet, but we know that in God’s perfect timing she will be completely off medication. We will not stop praying or believing that God will completely restore her. Until that glorious day comes, we will praise God for bringing us so far and for entrusting us with this precious angel.

Thank you so much for continuing to pray for Hannah. We know that we’re not out of the woods yet, but the light sure does get brighter and brighter every day.

Speaking of bright… Hannah just amazes us every day with how much she knows. She communicates with us very well, and normally uses words fairly fluently to tell us what she wants (although she does get a little whiny at times). She knows her ABC’s and has been reciting them for months. Her newest thing is saying them backwards! If she’s looking at the letters, she can go all the way from Z to A with no problem, and even if she’s not looking she can go from Z to Q! She counts EVERYTHING, reciting numbers all the way up to 13 or 14 by now. The cutest thing in the world is hearing her say new words. We read to her all the time, so she has picked up quite a big vocabulary. My favorite is “ketchup” — she says “chep-up”!!! A few of her books she will actually sit down and read out loud. Of course, much of it is her native “gremlin” tongue, but she definitely says key words about what is going on in the page. She is just such a delightful child; every day with her is such a blessing.

Almost 22 months old!

Hannah continues to astound us all! She is almost 22 months old and is doing fabulous! First, the fun stuff. She is talking up a storm! It’s mostly “gremlin talk”, but she can say a ton of real words, and she knows key words and their context, like come, help, please, thank you, up, down, hi, bye, all gone, “ok”, and my favorite, “eee oooh” (I love you)! She has got to be the happiest child I’ve ever seen. We have reached the stage where we can reason with her quite effectively. Of course, like any other 21 month old, she does have the occasional fits, but they aren’t really that bad. She LOVES going outside and running around, and her favorite activity is “sing” (to swing). When we tell her it’s time to go inside, her only response is “sing”…”sing”…”sing”! She’s hilarious, a truly delightful little girl, full of joy and tons of energy.

We had a checkup with her cardiologist on April 5th. EKGs and ECHOs were all perfect. The ultrasound techs just can’t get over how normal her heart looks, that it looks perfect. And praise God, it is perfect! Her cardiologist began weaning her medications, cutting the Amiodarone dose in half. He put us on a schedule to have her weaned off the propranolol in 4 weeks. He wanted to do another holter monitor just to be sure, and the results were…perfect! Hallelujah!

Today was a milestone day — she is now completely weaned from propranolol! Praise God! She has been on this medication ever since we were discharged from Ochsner over a year ago. Now she is just taking the smaller dose of Amiodarone. She goes back to the cardiologist in two weeks for another checkup, and to decide how to proceed in weaning her from the Amiodarone.

Lori and I feel such a peace about this. We know that God is (and has always been) in control, and fully believe that He has completely healed her little heart. Last week, I heard a sermon about healing, and of course, all I could think about was Hannah. I began to pray for her, claiming victory by the blood of Jesus, and I felt this incredible peace… I felt God tell me, as clear as day, “I have already healed her!” Lori told me that about a month ago, she felt God say the same exact thing. So now instead of praying for her healing, we rejoice and thank God that He has already healed her.

Please continue to pray for Hannah, but also give thanks to God for the miraculous work that He has already done!

Growing up! 19 months old!

Just checking in…Hannah is still doing fabulous! We can’t believe that she is already 19 months old. We haven’t seen her cardiologist since October and it’s been great to be away from doctor’s offices! Her 18 month check-up with her pediatrician went very well, and her weight is finally up to 20 pounds. Developmentally she is right on track, if not exceeding our expectations. In fact, one of the “skills” that her doctor asked about was if she could walk backwards. We couldn’t really remember seeing her do that, so we said we weren’t sure about that one. Wouldn’t you know, that night Hannah randomly decided to walk across the den backwards. It was as if she had heard us talking about it in the doctor’s office! Too funny. Her vocabulary is really expanding too- she says about 15 words including cold, duck, shoes, sea, key, up, three, and her first sentence, “Where is it?”  She identifies colors and shapes and has now moved on to letters and numbers. Watch out kindergarten! One of our favorite things that she does is the motions to Itsy Bitsy Spider. She gets so proud of herself and claps at the end. Too cute! Our only problem area seems to be on Sundays going to the church nursery. Hannah is not a big fan of separation to say the least, but we’re working on it.

April will be here in another month and a half, and at that time her cardiologist will take her off both medications. We anxiously await this transition and believe that she will do FINE! Please pray with us that her heart will continue normal rhythm and will no longer be dependent on the medications. We truly believe that God has already healed her heart completely! As hard as it was going through the tough days, we are thankful that we now have an amazing testimony to share with the world and offer hope to the hurting. We know that God hears and answers prayer, and every one of Hannah’s doctors who saw her then and now, would agree. She is a miracle!

Another one of the joys that we have experienced is working with the local Louisiana Pediatric Cardiology Foundation. Our annual fundraiser tennis tournament will be held April 3-6 at the Country Club of Louisiana. Money raised will be used to assist needy families of children with heart conditions with medical care. We truly believe in supporting this cause to give each child with a life-threatening heart condition the best chance at life. For more information, or to make a donation, please visit www.lpcf.com.We are currently accepting business sponsorships, silent auction items, and tournament registration forms.

As always, thanks for your prayers and for checking in on us!