Author: Greg

We took Hannah to her cardiologist this morning for her follow-up appointment. We were glad to see that her weight was 14 pounds, 3 ounces. This means that she did not lose much while in the hospital! Her ultrasound showed that her shortening fraction is still holding out at 15%. We are hoping that it will continue to improve as her SVT is kept under control by the medications. We’d like to see it in the upper teens. Hannah has to wear a Holter Monitor for 24 hours. We started this morning and will take it off tomorrow around lunch time. It basically takes a 24-hour EKG. Her cardiologist is hoping to see very few rhythm disturbances, especially while sleeping. So please pray specifically for this. We are so thankful that Hannah has been feeling good all week. She is eating well, sleeping at night, and so happy during the day. Our biggest challenge right now is giving her all the medications. She is learning new ways to refuse them and has quite a lot of willpower. We just pray, pray, pray that she gets all that she needs. We are still believing that one day she won’t have to take them anymore! This bump in the road is not stealing our faith that she will be totally healed.

We are home!!!!!! Hannah was discharged from ICU early this afternoon. They let us go straight home without even moving out to the regular pediatric floor. What a blessing! They did another EKG this morning and the cardiologist said he was very pleased with everything he saw. I think the worst part of the whole hospital stay was when the nurse removed the dressing from her IV. Hannah did NOT like having all that tape removed from her head and she let everybody know. Poor baby! We will be giving Hannah 6 medications now, and most of the doses were increased. It is definitely a challenge to get her to take all that medicine, but we tell her how blessed we are that that’s all we have to do. No surgeries, no medical procedures, no injections, just syringes full of meds. This Thursday we will receive her heart monitor at our check-up with her cardiologist. That should be interesting getting her to wear that device all day long. But again, we are so thankful we can do that in the comfort of our own home.

God is so faithful. Friday was definitely a terrifying day, but the reality is that it just makes the miracle that much more amazing. Doctors and nurses were astonished that her heart rate was so high. One said that she’d never seen such a high heart rate. Another said that her rhythm was very unusual, unlike all the common arrythmias they’ve seen. Yet she continues to play and laugh, and even started trying to crawl today. Hannah is the toughest little cookie we know! God is still in control, and we give Him all the glory for getting us through this bump in the road. He saw it coming and prepared the way for Hannah to get the care she needed at exactly the right moment.

Please continue to pray for little Brea at Arkansas Children’s Hospital, the 20 month old still battling cardiomyopathy. There is a possibility that she will have open heart surgery this week. They are considering putting in the Berlin Heart to hold her over until she receives a transplant. Also pray that health insurance and financial matters will be sorted out.

Thank you so much for praying us through this second hospital experience. Your prayers strengthen us and increase our faith.

Lori & Greg

Hannah had a great night last night.  They don’t think she’s gone back into SVT in 24-36 hours.  They have stopped all her IV meds and have reintroduced Propranolol (the beta-blocker she used to be on).  They have also tweaked the dosages on some of her other medications.  They are going to monitor her for the next 24 hours or so, and if all goes well, we will be home again tomorrow!  Praise God!!!!!!  She will probably be sent home with a halter monitor to track her heart rate over the next few weeks.  We will have to keep a close eye on her though, because the amiodarone is stored in body fat, so it will take her body a few weeks to metabolize all of it and flush it out of her system.  So we’ll be breathing a little easier once that is over with.

Praise God! Hannah’s echo today showed that her shortening fraction is back up to 15%. This was wonderful news. She has also taken two full bottles today. She looks great and is playing in her crib with lots of toys. She obviously feels much, much better. They started her on Propranolol this afternoon, so our prayer is that she will respond to it again so that her heart rate and rhythm will remain in control. They also did another EKG and we are awaiting those results. We will probably be in ICU for several more days as they monitor her continued progress. She must be weaned from the two IV meds also.

While all of this was a very frightening and unexpected event, we are once again fully relying on God to take care of Hannah. We know He is in control and we give Him all the glory for the miracle He continues to work in her life. He is faithful and we know He has great plans for her.

Trusting Him,

Lori & Greg

Well, we’re back in the PICU at Our Lady of the Lake in Baton Rouge. Hannah stopped eating again yesterday, so we brought her to the cardiologist and they did a few EKGs and an ECHO. He said she has SVT (supraventricular tachycardia), which is an insanely high heart rate caused by a rhythm problem in the heart. Basically, her heart rate will be completely normal for one minute, and then all of a sudden it will skyrocket (the highest we saw it yesterday was 280). The ECHO showed that her shortening fraction had decreased to 7% (three weeks ago it was measured at 18%). Yesterday she kept going in and out of SVT, so they admitted her into PICU and started a medication called Amiodarone, which is helping to control these arrhythmias. They also started giving her IV fluids, as well as Milrinone. She is also still taking her other oral medications (Digoxin, Carvedilol, and Enalapril).

One bit of good news is that even though her ECHO showed a decreased shortening fraction, her heart has not gotten any bigger. They are also thinking that this SVT may have caused her Dilated Cardiomyopathy in the first place. The heart is just like any other muscle in your body — if it’s constantly beating very fast, it will tire and start to cause damage. This would coincide with her biopsy results from Ochsner which showed no sign of myocarditis (viral inflammation).

Today Hannah is acting like her normal self. I’m sure she’s wondering why in the world she’s in a hospital! They are going to do another ECHO today to remeasure the shortening fraction. They are thinking that now that she’s out of SVT, her shortening fraction will be much higher. If the heart is beating insanely fast, the efficiency of the heart decreases (even people with a completely healthy heart would experience this). For the long term, they are planning on putting her back on Propranolol, a beta blocker that also helps with arrhythmias. This is one of the medications she was weaned from a few weeks ago.

We are believing that this is just a slight bump in the road to her recovery, and that the ECHO today will show that her ventricular function will be at least as good as it was three weeks ago. This may also help the cardiologists figure out what caused her condition in the first place, so hopefully this will help them figure out how to best treat her condition.

Please pray that her ventricular function will show improvement. God has already worked so many miracles in Hannah’s life. So many lives have been touched already with her story, and we are believing that through this even more lives will be touched. Our God is still in control. He knows what’s going on, and He knows what needs to be done. Pray that God would use this to help her doctors figure out how to treat her condition. We serve a great and mighty God. He is mighty to save! We praise Him that He has brought Hannah so far in such a short period of time. There is no question in anyone’s mind that He is performing miracle after miracle in her life. We pray that the presence of God will just emanate from her room, that every nurse and doctor that comes in will just sense the peace and presence of God.

On a side note, her nurse last night goes to Healing Place! It is so obvious to us that God is orchestrating every single step in Hannah’s road to recovery! He continues to amaze us every day!

Hannah continues to thrive at home!  She has become quite the little chatterbox, saying all sorts of new things.  She is so active — you would never guess she has a heart issue if you saw her rolling around playing and laughing all the time.

She has been completely weaned off of the Lasix, and next week she will be finished with the Propranolol!  She will most likely continue taking the remainder of her medications for the next few years, until her heart has completely regained its function.  We are still believing for a full recovery in Jesus’ name!

Please continue to pray for the Wusterbarth’s and their little girl, Brea, who has the same condition that Hannah has.  She is still in PICU.  Please pray that God would completely heal her heart, the heart that He designed for her!

We also want to remember Brian Hess and his family.  Brian was in a very bad car accident and is still in a coma.  Please pray for him, his wife Kimen, and their 6-month old son Jacob.  Pray that God would give them comfort, and that He would completely heal and restore Brian!

Thank you all so much for your continued prayers for Hannah.  She is such a miracle.  Every moment we spend with her is so cherished, so precious, so priceless.  Pray that God would continue to strengthen her heart, that it would completely regain its function.  We are so touched by all your prayers, and cannot ever thank you enough.  We know that God is the one who brought her out of the hospital.  He is the one who has strengthened her heart to this point, and who is continuing to work in her heart still.  Our God is still in the miracle business!

“I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move. Nothing will be impossible for you.”  Matthew 17:20

On Monday, Hannah went to see her pediatrician, who said she looked outstanding.  She weighed 14lbs 5oz, which is perfect for her height.  He listened to her heart and her chest and said she sounded great.  He was also impressed by her development and that she was doing so well on solid foods.

That night we had a tiny scare — she didn’t seem too interested in eating, although it wasn’t NEARLY as bad as when all this first started.  We also noticed that every now and then she would start breathing really fast, but then it would go back to normal.  She actually does this a lot, but usually it’s because she’s excited or trying to talk to us.  She hadn’t had a “good” poopy diaper in a few days, and we could tell that her tummy was bothering her a little.  We called the cardiologist’s office, and they said to just watch her close, and if we’re still worried about it that we should check her into the ER.  After about another hour of trying to get her to eat more (and of course we’re already freaking out by now), we decided to take her in to the ER at Our Lady of the Lake, just to be safe.

We were worried when we got to the emergency room, because it was PACKED.  We told the nurses about Hannah and her condition, and they called her name next.  Praise God, we didn’t have to wait.  They took her vitals, and they all seemed pretty normal.  They let us wait in a hallway away from all the other patients to make sure she didn’t catch something.  We didn’t have to wait very long at all, and we were brought back to a room.  While we’re sitting there praying (and freaking out), a nurse walked in and said she recognized us from Healing Place!  She knew about Hannah’s story already and said she had been praying for her.  Isn’t it amazing how even though Satan tries to distract us and make us question our faith, God intervenes and gives us peace!  Not one, but two nurses that night walked in to see us because they recognized us from Healing Place!  I mean really, what are the odds of that!  It was so comforting to know that Hannah has been in the hands of believers!

The doctor came in, and after checking her out, he said she looked really good, and that she might just be a little constipated.  They gave her an enema, which she did NOT like one bit.  About 15 minutes and two diapers later, she felt much better, and we were soon discharged.

We took her to the cardiologist the next morning, so he could do an ultrasound and make absolutely sure nothing else was going on.  The ultrasound showed good signs of improvement in her condition!  Her shortening fraction was measured at 13-18%, and the diameter of her left ventricle had decreased to 2.7cm!  Praise God!  He continually amazes us!  The cardiologist said that he is not worried at all about Hannah’s feedings, which is great!

Since that time Hannah’s appetite has gotten closer to “normal”.  We still think her tummy is hurting her a little bit, so the doctor called in a laxative prescription for her, which she has been taking for two days now.  Her pediatrician also recommended we use glycerin suppositories if we need a little extra help.

Yes, we went to the ER for constipation, but wow, was it ever worth it!  We received reassurance from God that He is still in control, and also got an unplanned update on Hannah’s heart function, which was definitely the best it’s been so far!

“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.” James 1:2-3

Yesterday was a very special day for us. Hannah was dedicated in church!! If you remember, two months ago we had scheduled her dedication to be on December 16th, but she was admitted into the hospital instead. So finally, on February 17th, close to Valentine’s Day, we were finally able to have her dedicated. As she was smiling on stage and staring quietly at all the people, we know that heaven was smiling down on her. Isn’t it amazing that exactly two months ago she was in a helicopter, in very critical condition, being flown to Ochsner?? But God is faithful, and she continues to do so well at home. She’s rolling all around, sitting up, eating lots of solids (green beans are her new favorite), and saying Da-Da. She is the happiest baby I’ve ever seen and hardly ever gets upset. She certainly seems to value the little things in life already! She has taught us so much.

Last night Greg and I had a wonderful opportunity to meet a family with a 20-month old daughter that is battling the SAME heart condition that Hannah has. They just happened to have the same pediatric cardiologist that Hannah does, and he told them about us. We visited them at the PICU and saw their precious daughter looking much like Hannah had at the beginning of our trial. We saw a familiar doctor that Hannah had those first few days…and it seems like they learned a LOT from how Hannah was treated. Greg and I remember praying that Hannah’s treatment would somehow help other children with the same illness. And once again God was faithful! It was a joy to share all that God has done for us and will do for them. Hannah is a story of hope. We are thankful for this divine connection. They are a strong Christian family with great faith, and we join with them in prayer for their daughter’s complete healing. You can check out their amazing adoption story and updates on their website. Go to  www.babyjellybeans.com and type Wusterbarth in the last name search field.

Greg and I are continuing to work with the Louisiana Pediatric Cardiology Foundation in planning the upcoming fundraiser. Greg has begun work on the website, which is www.lpcf.com. Thanks to Rob from HPC for designing the awesome logo! We are still in need of corporate sponsors, so if you are interested, please let us know!

“The Lord is faithful to all His promises and loving towards all He has made.”  Psalm 146:13

This past Friday we took Hannah to her cardiologist for another check-up. Her heart rate was 140 (completely normal) and her breathing rate was 39 (also completely normal). He is going to try to get her completely off two of her medications, Propranolol (beta-blocker) and Lasix (diuretic), so we have started weaning those. That will leave us with only 3 heart meds and aspirin!! AND…we don’t go back to her cardiologist for 6 whole weeks! Hallelujah! We are praying, praying, praying that her next ultrasound on March 22nd will show much improvement.

Here’s more good news…

A couple days ago we got a notice in the mail that said we had a certified letter from Ochsner to pick up at the post office. I waited until yesterday to go pick it up. I figured it was just another statement or something from our doctor’s visit there a week ago. As I was waiting for the postal worker to retreive the letter, I saw her devotional calendar on her desk. For yesterday’s date, February 10th, the verse was Ezekial 36:26 which says,

“I will give you a new heart and put a new spirit in you.”

I thought, “Wow. God put that there just for me to read!” The verse alone renewed my sense of faith in Him, that He is healing Hannah. Then the postal worker handed me the letter. It was from the Cardiomyopathy and Heart Transplantation Center at Oschner. I tore it open it before I even got to the car. Here’s an excerpt of what it said:

“We are writing to inform you that during Hannah’s recent hospitalization her name was placed on the United Network for Organ Sharing database waiting list. She was listed as a status 1A for heart transplantation on December 29, 2006. During this same hospitilization, her medical condition improved and on January 8, 2007, her listing status was changed to a Status 7. After being seen in the clinic on February 1, 2007, by Dr. Thomas Young, her medical condition was deemed stable and she was removed from the list.”

Hannah is no longer on the heart transplant list!!! PRAISE GOD!!! Those few sentences are evidence of God’s faithfulness in healing her heart. We prayed from the very beginning that she would not need a transplant, even when all the doctors said she needed a new heart. We believed this was not God’s will for her. As Jesus healed the sick in the Bible, He always said that their faith made them well. We believe this is the key to Hannah’s miracle, and we continue to pray in faith for her complete healing.

“If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.” James 1:5

God gave me a revelation early yesterday morning about how to successfully give Hannah her medications! I prayed for wisdom, and once again He was faithful. I had noticed that she always took her bottle with her afternoon medicine. Since it is such a small amount, she can’t even detect it. So yesterday morning and evening, when she gets all of her meds, I tried giving her the bottle one ounce at a time– and in each ounce I put only one or two medicines. This took a lot of trips back and forth to the kitchen, but she took it ALL every time!! Didn’t even leave a drop. God is so good! I had been really worried about giving her meds by syringe because she always lost some. And it is very important that she gets every little milliliter. Isn’t it so good to know that God pays attention to all of our worries??

On a totally different note…

Greg and I attended another meeting today about an upcoming fundraiser for the Louisiana Pediatric Cardiology Foundation. The event will be a mixed doubles tennis tournament held at the Country Club of Louisiana on May 31st-June 2nd. It is being chaired by Hannah’s cardiologist in Baton Rouge, and he and his partners were the founders of the LPCF. The charitable organization provides support services to children who suffer from cardiac disease. Greg and I, along with many other parents of children with heart-related problems, are working together to plan this event. Right now we are seeking corporate sponsors who are willing to provide donations. The LPCF’s goal is to raise $25,000 and we believe it can be done. There will also be a silent auction during the event, so we are seeking local businesses who are willling to provide products or services to be auctioned off. If you or someone you know is interested in donating, please send us an email (click “private message” on this website’s menu) and we will provide you with more details. Also, any tennis players interested in participating in the tournament– registration has not begun yet, but will be limited to the first 120 teams that sign up.

Thank you for helping us make a difference!!!