Month: December 2006

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!

Hannah’s heart biopsy results came back today, and the biggest news is that she doesn’t have myocarditis (viral inflammation of the heart).  That doesn’t mean that she didn’t have a viral infection earlier — that is still possible.  It’s also possible that the problem could be genetic.  A genetic problem doesn’t necessarily mean that she inherited this heart issue.  The doctors said that random genetic mutations happen all the time — some are good, some are bad, and some are fatal.  This could be the result of a bad mutation, which could have affected the tissues of her heart and their function.  All said and done, they still don’t know what caused it, but they can definitely say that her heart is not inflamed right now.

Hannah’s heart rate has been a little higher today.  She is about to start taking Carnitine supplements, just in case her heart condition stems from a metabolic issue or Carnitine deficiency (the doctors say that this is highly unlikely, but Carnitine supplements are safe).  The doctors have been testing her to see if she could safely come off the ventilator by doing CPAP (they stop the ventilator from breathing for her and let her do all the work, while still applying a slight amount of pressure at the end of her breaths to make sure her lungs stay open).  She has been doing GREAT on the CPAP tests, so they are hoping to take her off the ventilator later tonight.

Please pray that God would continue to guide the doctors and nurses taking care of Hannah, and that she will have no problems coming off the ventilator!

Hannah has pretty much recovered from this morning’s heart cath.  They put a wrap around her legs to keep them straight for 6 hours after the heart cath.  It was so funny — she looked like a little mermaid with her little feet sticking out of the bottom!

She was a little restless tonight, and seemed to be uncomfortable.  They gave her some pain medicine and have resumed the anti-clotting medication.  They also started her on a new medicine to increase her red blood cell count.  This is preferred instead of a blood transfusion, in the event that a transplant is needed (they don’t want to introduce any more antibodies into her bloodstream).  Her heart rate has been a little higher than normal today, but has now come back down into the 150-170 range.  They haven’t resumed feeding her through the tube, as they are waiting for all the anesthetic effects to completely wear off.

The biopsy results aren’t in yet, but we’re hoping to hear something tomorrow.  Hopefully they will have a better idea of what caused this and how to treat it.  Please continue to pray that God will touch her heart and allow it to heal on its own.

During the heart cath this morning, we found a really cool verse:

“From heaven the Lord looks down and sees all mankind; from His dwelling place He watches all who live on earth — He who forms the hearts of all, who considers everything they do…We wait in hope for the Lord; He is our help and our shield.  In Him our hearts rejoice, for we trust in His holy name.  May Your unfailing love rest upon us, O Lord, even as we put our hope in You.”  Psalm 33:13-15, 20-22

AMEN!

The heart cath went flawlessly!  Praise God — He is SO faithful!  They closed up the PDA, and also verified that the heart’s structure was ok (all the arteries and veins were where they need to be).  They saw that the left ventricle was dilated, which was no surprise.  They were able to take 4 samples of tissue from her heart to perform a biopsy.  Those results could possibly be back tonight, but it may be a few days before we know anything definitively.  The biopsy should show whether this was a viral infection (called myocarditis), and should be able to guide them in further treatment of the condition.  They verified that the pressure of her lungs is low enough that she will definitely be able to accept a heart transplant should we have to go that route.  We are still believing God that we will not have to go that route, but it is very reassuring to know that a transplant is still a viable option.  Hannah is now back in her room in recovery.

Please continue to pray that the doctors will be able to glean some useful information from the biopsy results and will better know how to treat her condition.  God is so faithful, and the power of prayer is incredible!  Thank God that He continues to have His healing hands on Hannah’s heart!  Thank you all so much for your faithfulness in praying for our baby girl!

The cardiologist did another ultrasound this morning, and he said that Hannah is doing better than she was before.  The echo showed a tiny amount of improvement in the heart’s function.  But he DID find something else that he hasn’t seen before.  All babies are born with something called a PDA (not sure what it stands for).  This is a blood vessel that connects the pulmonary artery with the aorta, and is used in the womb (circulation is different in the womb, since a baby’s oxygen comes from the placenta and not the lungs).  This PDA usually disappears within a week of birth.  He said that he doesn’t think this is the cause of Hannah’s heart condition, but if it’s big enough for blood to flow through, it could make her heart have to work harder to pump blood to the rest of her body.

Hannah’s heart rate today has been between 130 and 160, with a few spikes in the 190s when she gets irritated.  Her ventilator has been decreased to 12 breaths per minute, and she usually breathes an additional 14-20 breaths per minute on her own (above what the ventilator is doing).  All blood tests continue to come back excellent.  She is getting 24cc’s of formula per hour, and the caloric intake of the formula has been increased.  She was awake for quite a while earlier today, the longest we’ve seen her awake in one stretch.  Her fluid intake is nice and balanced with her fluid output, and she is getting more “regular” (if ya know what I mean).  Praise God for the poopy diaper!!!

Hannah is scheduled to undergo a heart cath at 9:00am tomorrow.  While they are looking at her heart, they are going to monitor pressures, make sure everything is where it needs to be, and make absolutely sure they aren’t missing anything.  They are also going to look closely at this PDA, and if they think it’s a problem, they can fix it right there in the cath lab.  They may also do a biopsy of her heart if they don’t find anything out of the ordinary.  Basically, while the heart cath is taking place, they will grab a tiny piece of heart tissue and examine it in a lab.  This will provide them with more information about what could have possibly caused this condition in the first place, and that should give them a better idea of how to treat it.

There are some risks involved with a heart cath, but we believe that God has led the doctors to this decision for a reason.  God’s presence is going to fill that room, guiding the cardiologist’s hand while this procedure is taking place.  The cardiologist feels that there is more risk in not doing the heart cath rather than doing it, and is confident that everything will go smoothly.

Please pray that the heart cath goes perfectly as planned tomorrow, and that God will open the doctors’ eyes to see what the problem is!