Author: Greg

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!

Hannah is looking more and more like a normal baby each and every day!  She is smiling, playing, and silently laughing!  She looks and acts just like she did before we brought her into the hospital, with the exception of a few tubes.  Her heart rate climbed back into the 220s this morning, but only briefly.  They gave her some fluids and it came right back down.  They eased the ventilator some more today, so she’s getting 14 breaths per minute plus whatever she breathes on her own.  They also decreased the pressure of the ventilator a little bit.  They increased the amount of formula she receives by feeding tube to 24cc’s per hour.  I have no idea how much that is in ounces.  😉  But regardless, she is eating more and getting more calories into her system.  We spoke to one of the PICU doctors again today, and we think she will be listed for a heart transplant tomorrow.  The other day, we spoke to a infectious disease doctor who really made us nervous about the whole transplant scenario.  The PICU doctor was extremely encouraging, reaffirming to us that God is in control, and that being “on the list” doesn’t mean that we’re giving up hope.  Everything will happen in God’s time.  If God wants to heal her heart, than a transplant will not be available.  If God wants to use a transplant, then the perfect heart will become available.  He is going to work everything out in His perfect timing.  So we choose not to worry about the route that He will take us on.  God knows what is best for Hannah.  We are anxious for nothing.  We choose to stand firm in our faith, knowing beyond a shadow of a doubt that He is in control and will walk with us every step of the way.

Today, we realized that we have SO much to be thankful for.  We are thankful that we got Hannah to the doctor and into the hospital when we did.  We are thankful that we’ve been able to spend this past week with her.  We are thankful that we’re even in the position to consider a heart transplant as an option.  We are thankful that the hospital cafeteria was open on Christmas Day, and the King Buffet Chinese restaurant was open on Christmas night!  We are so blessed to be able to live in a country where health care is readily available.  Thank God for health insurance.  Thank God for doctors and nurses who care so much about their patients and their families.  Thank God for the prayers and support that we’ve received from all over the country.  Thank God that He is going to heal our baby girl!

The cardiologist will be back in the morning to do another ultrasound of her heart.  Please pray that he will be amazed by the improvement in Hannah’s ventricular function!

We just met a couple that has 2 children in the PICU here, both having the same illness. We don’t know what that illness is, but we know the children’s names are Timothy and Aleah Michael. Please keep them in your prayers.

Hannah had another day of good reports. We were praying last night for her left lung to be in much better shape today, and praise God, it was! The nurses listened to her chest and it sounded much better than yesterday. They reduced the pressure of her breathing machine a tiny bit, as well as decreased the oxygen per breath and the number of breaths per minute (all meaning that Hannah is doing more of the work now). They increased the amount of formula she’s being given through her feeding tube, and they stopped giving her the TPN, which was a solution of nutrients that was given by IV. They also stopped monitoring her CVP (central venous pressure), because it has been stable for quite some time now.

We are still really concerned about her heart rate. While it’s considerably lower than when we got here, it seems like it’s been climbing over the last few days. Please pray that God would continue to restore her heart! He designed it, so we know that He can fix it! We are praying that when the next ultrasound is taken on Tuesday, the cardiologist will see some more improvement!

Thank you all so much for your prayers and support. You have no idea how much it lifts us up to know that others are praying for our little girl. Merry Christmas!

This morning we had a special little blessing. Hannah was wide awake, content, and even smiled at her Mimi (Lori’s mom)! She is much more alert now and seems to be getting somewhat used to her situation. We were hoping to have the ventilator reduced to minimal effort this afternoon, but an x-ray of her left lung showed some fluid. This is happening because the left side of her heart, which is enlarged, is pressing against that lung. The possibility of a collapsed lung is very frightening, but we rebuke that in Jesus’ name! They increased the pressure of the breathing machine and tilted Hannah on her right side in order to keep that lung open. We are praying that the mucus will break up and the next x-ray will show improvement. We are so anxious to get her off the breathing machine. Without all those tubes, we will be able to pick Hannah up and hold her. What a wonderful Christmas gift that would be!

A few other blessings happened today: they removed the IV from her foot, they removed her catheter, and they increased the amount of formula she is being fed. We are thankful that she is more comfortable today than yesterday. We continue to expect God to do great things and are trusting Him completely, even when we hit bumps in the road.

Hannah has been a little more active today. We know she has to be so uncomfortable with all the tubes and IVs hooked up to her. It is so hard to watch her get upset, and there’s nothing we can do to comfort her. All we can do is just hold her hand, rub her head, and just talk softly to her. Because of the breathing tube, she can’t make any noise, so her cries are silent, but tears still flow. It just breaks our hearts.

They started giving her a broken down formula through her feeding tube today. It’s a tiny amount now, but that will increase as her body allows. Her heart rate continues to be great, between 130 and 160, even when she’s awake and active. She ran a fever a couple of times today, so she’s on Tylenol and two antibiotics as a precaution. They think it’s probably just environmental (she gets too hot), and urine and blood cultures have all come back negative for an infection. There is one culture for which they’re awaiting results. Please pray that this culture comes back negative as well. The last thing we need on top of her heart condition is an infection.

They will probably do another ultrasound in the next couple of days. The cardiologist said that he doesn’t expect a vast improvement in two days, and the recovery process will be a slow one if the heart is in fact recovering. We still do not know the cause of all this. We are praying and believing God that He is healing her heart. We are choosing to walk by faith and not by sight. Please pray that God would continue to touch Hannah’s heart and make it whole again. We miss our little girl so much.

We just got finished visiting Hannah in her room. She is moving around very well now, but she is being sedated in order for her to remain comfortable (and to not pull out all the IVs). We just saw her open her eyes for the first time since Sunday morning. What a blessing! What a miracle!

GOD ANSWERS PRAYER! Last night, we were specifically praying that the next ultrasound would show improvement in her ventricular function. The cardiologist did an ultrasound this morning, and said she looks better today than she did yesterday! The fluid around her heart is completely gone. The interior diameter of the left ventricle is still between 3.3cm and 3.5cm. He said that he can see a small improvement in Hannah’s ventricular function! PRAISE GOD!!!!

They took her off of the paralytic medication, so she is starting to move around a little bit. Her heart rate went up a little during this time, but everyone expected that. Her heart rate is now between 150-170, and she is breathing on her own, along with help from the ventilator!

One of the residents commented that we were doing surprisingly well, considering everything that has taken place this past week. We were able to share that it is only through the strength of God, trusting Him completely with this situation, and the power of prayer. We continue to look upward for hope instead of complaining inward. We are trying to share the joy we have in Christ with everyone we come in contact with — nurses, doctors, residents, staff, and other families here — and let them know that we are praying for them daily. Please pray that God will continue to touch her heart and heal her!