Month: January 2007

We met with our cardiologist here in Baton Rouge this morning.  He was impressed by Hannah’s improvements!  She weighs a little over 12 pounds now, which is about a pound less than she weighed at 4 months.  He did another ultrasound of her heart, and measured the diameter of her left ventricle at somewhere between 3.3cm and 3.9cm, and her fractional shortening was measured at between 9% and 13%.  She continues to improve daily!  Praise God for the miracle He is doing in her heart!  While Hannah has shown improvements over the last 4 weeks and her outward appearance is great, the cardiologists are still concerned with the numbers they’re getting from the ultrasounds.  BUT…  No matter what the ultrasounds and numbers say, OUR GOD IS IN CONTROL!  Over the past 4 weeks her fractional shortening has increased from less than 1% to 13%.  The miracle is obvious!  They think that it could take up to a year or two on heart medications before her heart returns back to normal.  No matter how long it takes — the hand of God is on our little girl, and her heart WILL be healed in Jesus’ name!

It is so encouraging to see her playing at home!  She has really picked up right where she left off before all this happened.  She has resumed trying to roll over from her back to her tummy, and succeeded a few times tonight!  She continues to take all her medications and bottles VERY well.  We are so grateful and thankful to God for this precious girl, and we are so blessed to be a small part of the bigger miracle — God is touching lives through this experience.

What a sight to see little Hannah sleeping peacefully in her own crib. And waking up with a smile. She is the greatest joy! What an honor to be her earthly parents. Children truly are a gift from the Lord. They are precious treasures. It is amazing that as much as we love Hannah, how much more God loves each of us! We are formed in His image. Here is one of the verses that gave us such comfort during those long 3 weeks at the hospital:

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.” Psalm 139:14-16

Another favorite…

He said, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.” And He took the children in His arms, put His hands on them, and blessed them. Mark 10:14-16

Please pray for a good report tomorrow from the doctor. Our appointment is at 10:30 am. And please continually pray that Hannah will take her oral medications. This morning, she wouldn’t take the bottle (I’m sure formula mixed with 10 meds doesn’t taste too well), so we had to use a syringe to get all the medication down. But thankfully she did fine the rest of the day. THANK YOU for your continued support and prayers. We are so encouraged by the messages and emails we receive every day. We are truly amazed at the number of people who are standing with us believing for Hannah’s healing. We give Him ALL the glory!

WE ARE HOME!!!!!!! Hannah was discharged from the hospital last night around 6:00 pm!! Her doctor said the ultrasound looked about the same, maybe some small improvements. But still good enough to go home! We waited several hours to get all 10 of her prescriptions. Greg and I calculated the dosages written on each bottle, just like the nurse had taught us to do. We were SO glad we did, because one of them was completely wrong! If we had not caught this error, Hannah would have gotten 4x the amount of medicine that she needed. Thank you, God, for opening our eyes!! The devil is sure trying to steal our joy, because right when we got home, before we even got in the door, I (Lori) dropped the bag of prescriptions. Only one bottle was made of glass, and it broke. Medicine went everywhere. This was her MAIN heart medication, the most crucial one that she has to take, and she was due to take it again in 1 1/2 hours. Greg started making phone calls to the hospital and several pharmacies all over town. Many did not have it in stock. But God led us to one pharmacy that did have it, and we were able to get it filled and home just in the nick of time. Whew! How’s that for some drama?! We have an appointment with her BR cardiologist this Thursday, so please pray that all goes well and that she gets a good report. Home care will be pretty easy for us- they didn’t even find it necessary to send us home with a heart monitor. Wow. God has gone above and beyond, and continues to answer prayers in His perfect timing. We stand in awe and give Him all the glory.

We are declaring today, January 8th, as “Hannah’s Heart Day,” the day she will return home after our long journey. She had another good night last night. She slept well and has been happy all morning! They did the ultrasound around 11, so we are waiting to get the results. At the beginning of all of this, you could feel the tension in the room while the ultrasounds were being done. Today was different. There was a sense of peace and confidence. We are believing that her heart has improved, in Jesus name! Greg ran into one of the doctors at Subway today- He had seen Hannah a few weeks ago, and he literally couldn’t believe that we were getting to go home today. Our prayer all along has been that the doctors would be amazed. And they are certainly very impressed with her progress. Amen!

Thank you all for your constant support and prayers, and all the visitors that came to see us. Even the PICU nurses have come to check on her over the last couple of days! You don’t know how much that has meant to us during this season. The mission statement for our church, “a healing place for a hurting world,” has taken on such new meaning for us. We could not have gotten through this without everyone’s support, and certainly not without God Himself. We love you all, and will continue to give updates as her progress continues. We’ll be posting new pictures soon, too!

Hannah is still doing great! On the pediatric floor, it feels more like a little hotel room instead of a hospital. We can have more than 2 visitors at a time and stay in the room overnight with her. Hannah slept really well and woke up in the best mood. She smiles at everyone that comes in to check on her. One of the new residents said that he couldn’t believe she was ever sick because she looked so great. They took an x-ray of her lungs this morning and did some blood work. Her last port (which is like an IV but the line goes straight to an artery instead of a vein) was removed, so she is officially “tubeless,” except for the heart rate monitor. Her heart rate was a little higher yesterday, but this was expected because they decreased one of her medications. Last night the nurse taught us all about her medications and had us practice calculating her doses. The process was more complicated than we thought- it even required a bit of algebra! This took quite a while since she gets 8 medications at once. We’ll definitely be getting a HUGE supply of syringes to use at home. But we are getting the hang of everything. If all goes well with the ultrasound Monday morning, we should be home free! Please pray that the doctors see even more improvement in the function of her heart. We are so confident that her heart will heal over time, in God’s perfect timing. GREAT is thy faithfulness!

Hannah was moved out of the PICU today into a normal room in Pediatrics!  Praise God!  She is really doing great.  She is still listed for a heart transplant, but they’ve changed her status to 7; meaning, her heart is still really sick, but her condition is improving and she’s not in desperate need of a transplant.  We can feed her however much she wants now.  We’re still learning about all the medications she’s going to be on.  She no longer needs to get the anti-clotting shots in her legs and arms.  God is SO awesome — we didn’t even think to pray that she wouldn’t need these shots anymore.  In fact, we were trying to figure out which one of us was going to have to give her these shots at home!  He even answers the prayers that we forget to pray, but He knows our hearts!  She’s on baby aspirin instead, and the doctors say there’s a very low chance of her getting a clot.  They are planning on doing another ultrasound on Monday morning, and if all goes well, we hope to bring her home Monday afternoon!

As we were leaving the PICU today, one of the doctors talked to us about Hannah, and confirmed what we have known all along — her “gut” feeling is that Hannah will eventually be taken off the transplant list, because she is going to be healed!  And this is the doctor who initially told us that she needed a new heart!  WOW!!!  Our prayer has been that the doctors would be amazed at her progress, and we believe that they certainly have been amazed!  What an awesome God we serve!

Another great day for Hannah! She is acting like her old self, just smiling and cooing, happy as can be. They took her off the final IV medicine today without any problems. Her heart rate has been normal for several days now. She is able to take all of her medications orally by mixing them in her bottles. She is still getting two injections every day to prevent blood clots, but she only cries for a moment. Her poor little legs look like she has the chickenpox from all the shots. She will hopefully be able to take baby aspirin instead soon. Thank goodness! Tonight they put her in a regular crib instead of the medically-equipped crib she was in, because she doesn’t need all of that equipment anymore! Praise God! But here’s the best news….the plan is to move her out of ICU Friday into a room in the regular pediatric unit. God is SO faithful! We are SO excited! We will be able to stay in her room around the clock and practice giving her all the medications. Then hopefully, we’ll get to go home in a few days! So tonight will probably be our last night in the hotel. We can’t believe we are finally thinking about going home. We had no idea how long we would be in the hospital, even though it seems like it’s been an eternity already. We are so thankful that Hannah will be able to continue recovering in our arms at home. Please keep praying that her little heart will improve steadily each day!

The very first night we were in the hospital with Hannah, I (Lori) remember sitting in her quiet, dark room, wondering what in the world was going to happen to our precious baby. As I prayed, I sensed God asking, “Do you trust me?” I answered yes, even though I was completely terrified at the time. Then He said, “I will walk with you.” And He has, every single step of the way. He is faithful.

Hannah had a great day today. She was so happy and playful! For a while there she really had her days and nights mixed up, b/c she would sleep all day and be wide awake at night. But she is settling into a nice 3-hour feed/wake/sleep routine, and she seems much happier to be back on a schedule. Her cardiologist and the intensivist met today, and they have decided that if she can successfully get off of her last IV med, then we can probably bring her home soon!!!!!!!!!!! Hallelujah, praise the Lord, God is faithful! Although Hannah’s heart is still not functioning as normally as it should, they think that she will be able to take her oral meds at home and hopefully continue to improve. They are not ruling out the possibility that she may need a transplant in the future, but we are believing that she will not need one, ever! And of course there are all sorts of things that “could go wrong” when we bring her home, but we are not receiving any of that, in Jesus’ name! We thank God that His grace is sufficient for Hannah. His grace is sufficient for us, and His grace is sufficient for you. Amen!

We spoke to the geneticist this afternoon, and he told us a TON of information about Carnitine and how a deficiency can cause the kind of heart condition that Hannah has.  However, this is highly unlikely, as it would cause other kinds of muscular issues (not just the heart), and Hannah is perfectly fine EXCEPT for her heart.  He said it could also be an enzyme deficiency, and we will get the final test results back later this week.  The current long-term plan is to have her on oral medications to continue the treatment of her condition, while continuing to monitor her progress and reassess as necessary.  This could eventually be done at home.  Please pray that she is able to get off that last IV medication this week!

Even if this was caused by a genetic mutation (which according to scientific standards happen randomly), we know that this condition was not an accident and is not random.  God has a purpose and plan behind this.  It has not caught Him offguard; He is not surprised by any of this.  He created Hannah in His own image; He knew her before she was formed in Lori’s womb.  He knows how many tiny hairs are on her head.  We are continually presented with scientific facts throughout this experience.  There is a big difference between FACTS and TRUTH.  FACTS change as science and technology get better and better.  The TRUTH of the Word of God is everlasting and unchanging.  We choose to stand on the TRUTH of the Word of God!

“I am the Lord, who heals you.”  Exodus 15:26

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.”  Jeremiah 29:11-13

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  2 Corinthians 12:9

As Jesus was walking along, he saw a man who had been blind from birth.  “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”  “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him.”  John 9:1-3

Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted.  But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.  Isaiah 53:4-5

The cardiologist did another ultrasound this morning.  Her heart size has decreased some more, and her heart function has improved a little more!  PRAISE GOD for the miracle He is working in her little body!  The doctors say she looks much better.  She is still wolfing down her formula from a bottle.  They started weaning her off of the last IV medicine today, replacing it with an oral medication.  We are still waiting to talk to the geneticist about a possible Carnitine deficiency; in the meantime, she continues to receive Carnitine supplements (just in case).  She has responded beautifully to all the medicines and treatment she’s received so far.  Praise God!

It is amazing to us to read back through these updates and see how God has orchestrated every single detail of this entire process.  We know beyond a shadow of a doubt that He is in complete control of this situation.  We give Him all the glory, honor, and praise that He deserves for the miracle that’s unfolding before our very eyes!  We thank Him so much for all the people that are lifting Hannah up in prayer every single day.  This child is living proof that God answers prayer!  What an incredible testimony she will have when all this is said and done!  Thank you all so much for all the prayers and support you have given us through this time.  What an awesome God we serve!