Month: December 2006

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!

We have been praying for substantial improvements in Hannah’s condition. All blood work has come back with good results. Her capillary refill has returned to normal at 2 seconds. Today her heart rate decreased to the 125-140 range. She has been completely weaned off of the Dobutamine. Praise God for the healing process that is taking place before our eyes in our little girl’s heart!

The cardiologist has begun the procedures for getting her listed for a heart transplant, but they are going to wait to see how she does through the weekend before she is listed. The next big goal is to get her off of the breathing machine and try to wean her off of the sedation and paralytic medication. She is scheduled for another ultrasound tomorrow. Please pray that the ultrasound will show that her ventricular function has improved!

An ultrasound today showed that the interior diameter of her left ventricle has decreased from 4cm to 3.4cm. The fluid around her heart has substantially decreased. All blood work has come back with good results. Her capillary refill has decreased from 4 seconds to 2 seconds (if you press your heel, this is the amount of time it takes for the blood to return) — this indicates that her profusion has gotten better. Today her heart rate decreased to the 150-170 range (when we originally took her to the doctor on Friday, it was 212, and we’ve seen it as high as 250). She is being slowly weaned off of the Dobutamine medication, and she has responded very well. We are told that the best news is that her condition has not worsened. Praise God for the little victories that we hold on to every day!

Hannah is listed in critical but stable condition. She is heavily sedated and is on a breathing machine to give her heart a chance to rest. She received a blood transfusion Sunday night, which helped increase her hemoglobin levels and increase oxygen to the rest of her body. They did an IVIG treatment Sunday night, which added antibodies to her blood to help her fight the virus (if it was a virus that caused this in the first place).

This condition was more than likely caused by either a viral infection or a genetic anomaly. We are praying that it was just a virus, and after it passes ventricular function will improve. If it was genetic, then the cardiologists say that she will probably need a heart transplant. Please pray that God would heal her heart and she will not need a transplant!