Author: Greg

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!

Hannah has been doing so well taking a bottle that they have removed her feeding tube!  The only thing she still has is one IV port for the Milrinone, which they will be weaning her off of tomorrow.  All of her other medications are being given orally.  She looks so much better!  We can’t wait to see what the cardiologist has to say about her condition tomorrow.  We feel like she has come SO far in one week!  We are completely in awe — it is so obvious that God has His hand on our little girl!  What an awesome, faithful God we serve!

We’ve added another photo album with pictures of Hannah in the hospital.  See for yourself how much better she looks now!  God’s perfect plan is steadily coming to pass in His perfect timing.  We are so blessed!  Praise God!

Hannah celebrated New Years by pulling out her feeding tube last night!  Not a big deal, they put it right back in.  When we got to her room this morning, we were surprised to see that she won an award!  She had a certificate AND a medal proudly hanging on the side of her crib.  It was the “Champion Nippler Award”, because she finally ate a full meal from a bottle!  Praise God!  She has taken bottles every 3 hours today.  They are now trying to give some of her medications orally, and once that happens they may remove the feeding tube altogether!  They also reduced her breathing treatments to every 12 hours.  Hannah has been in such a good mood today.  She has been resting well and is content when she’s awake.  We’ve brought lots of toys in her room to entertain her.  She has enjoyed watching four episodes of the Backyardigans on DVD today.

Please continue to pray for the ultrasound scheduled for tomorrow morning.  We pray that the doctors would be amazed at how much her heart function has improved!

Hannah had another good day today!  They removed her arterial line, which they were using to take blood to run tests.  Those test results have been consistently good, so they don’t need to run them any more.  She is on a couple of beta blockers, which have succeeded in bringing her heart rate down into a reasonable range.  We actually saw her heart rate dip below 100 this evening when she was sleeping, and we were nervous that it was too low!  The nurses assured us this was normal for a child of her age when she is sleeping.  They have changed her feedings from 24cc’s per hour continuously to 72cc’s every 3 hours, which is more along the lines of how she would eat normally.  They also brought the feeding tube into her stomach (previously it bypassed her stomach and was going straight into her small intestines).  She is still a little dehydrated, so they are going to start giving her lacix every 12 hours instead of every 8 hours.  X-rays taken this morning showed much improvement regarding the fluid levels in her lungs!  Praise Jesus!  She is scheduled for another ultrasound of her heart on Tuesday, and the cardiologist will be able to tell how much her heart function has improved.  It has steadily been improving from ultrasound to ultrasound — please pray that this miraculous trend will continue!

As we head into 2007, we just want to thank everyone from the bottom of our hearts for all your prayers and support.  We praise God every day for the miracle we can see unfolding before our very eyes!  He is such a big God — He is completely in control of this situation!  It’s by your prayers and His grace that we can make it through each day.  We are so blessed beyond measure.  We pray for countless blessings for all of you in 2007!

This is a short update from Paw Paw Mills.  Greg went to Baton Rouge this morning to participate in their church music.  It is amazing that the name of their church is Healing Place.  Mimi and I went into Hannah’s room this morning and she was wide awake sucking on her pacifier.  She had been reluctant to take it after having the vent tube in her mouth for so long.  She seems content with it now.  They took the line out of her arm this morning to monitor her blood gas.  They said it had been perfect and they did not need to continue to monitor it.  They took her out of her bed and let Lori try to give her a bottle.  She did not seem too interested but we will accept those “baby steps.”  Our prayers are being answered one by one so don’t stop now.  There has been over 4,000 visits to the website from all over the country (including 12 churches in Montana), Australia, the Philipines and Canada.

After a brief spike in Hannah’s heart rate early this morning, it has come down to the 130-160 range for most of the day.  She didn’t really sleep that much last night, but she slept a lot today.  Last night she was a little dehydrated, so they left her on the IV fluids for about 8 hours longer as they raised the formula levels.  She is back up to 24cc’s per hour of formula, completely off of IV fluids.  Her voice has still not fully returned, so she makes little squeaks (which are REALLY cute)!  Her throat is still a little sore — she won’t even take her pacifier, probably because it still hurts to suck on anything.  She is getting breathing treatments daily, and is doing beautifully off the vent!  Praise God!  He is SO faithful!  Every day that passes, we see another little piece of the miracle that He is working in her life!

An ultrasound yesterday indicated a little more improvement in her heart function, although according to the cardiologist, the numbers are somewhat subjective. We’re waiting to talk to a geneticist, who will discuss the possibility of a Carnitine deficiency.

Overall, it’s been a really good day, and Hannah keeps looking better and better!  We have been able to hold her every night, which is such an incredible blessing!  Please continue to pray that God would restore her heart to His original design!  We enjoy reading your guestbook messages and emails every day.  It is so amazing to see how many prayers worldwide are being lifted up for her!  Thank you so much for continuing to bless our lives!  Your prayers and God’s grace give us the strength to make it through each day.

They did another ultrasound this morning, but we’re still waiting to speak to the cardiologist.  Hannah has been coughing up more stuff from her lungs, which is really good.  Her heart rate has been a little higher today, but they expected that it would climb a little bit now that she’s off the vent.  She is scheduled to start formula again at 6pm.  They will start her out slow, along with IV fluids, and then gradually increase the formula and decrease the IV fluids until she’s taking 24cc’s of formula per hour.  It’s so awesome to hear all the little sounds she makes again, even though she’s a little hoarse from the breathing tube.

We think they listed her for a heart transplant today.  Please continue to pray that she will not need this transplant, and that God would astound everybody with a full recovery.  We are standing on God’s word, claiming the victory that has already been won at the cross.  Praise God!  He has a perfect plan for her life, and He is in control of this situation — no matter what the ultrasounds and heart caths say!

This update needs no explanation… What an awesome Christmas present!

Please continue to pray that Hannah’s heart function improves over the next week, and that her heart will be able to handle being off the ventilator!

They removed the ventilator, and Hannah is doing great! Praise God! She looks SO much better! She’s a little hoarse, but her voice should return in a couple of days. This was such a BIG STEP! She has been off the ventilator for almost 4 hours now, and she is doing beautifully! Oh, thank you Jesus, thank you Jesus, thank you Jesus!!!

She still has some junk in her chest, but she’s coughing it up very well. She is still getting breathing treatments to help clear out her lungs. Her feeding tube is still in place, and she will continue to get formula that way.

Please continue to pray that Hannah keeps getting stronger and stronger, and that her heart function would get better and better! Praise God that she is doing well off of the breathing tube!