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We have been patiently awaiting this most recent cardiology appointment to see if AnnaSophia's heart had any new changes. We saw Dr. Duster, the cardiologist who performed her heart cath in Denver, as Dr. Runciman was on vacation and did not want AnnaSophia to go three weeks without being seen.
The good news is that there was no new deterioration of her heart. Her heart is still having a hard time pumping effectively, so the doctor started her on an ace inhibitor called Captopril. The doctor is hoping that this new drug will help her heart. We are also hoping that her congestive heart failure is the result of a "plumbing" problem rather than a heart muscle problem. After a few months on this new med, we should know if she has a muscle problem. The doctors are a bit mystified as to why she has heart failure right now. Usually, after they fix the narrowing problems she had before the heart cath, we don't usually see heart failure afterwards. This is concerning, and we pray that she does not have some underlying muscle problem.
She will also be taking Propanalol, iron and aspirin. We have been able to decrease her aspirin to 1/4 tablet three times a week. Hopefully, we will be able to decrease her iron after a pediatrician visit this week. The doctor said her pressures in her pulmonary arteries on her echo looked great, and he felt that she does not need to be on oxygen at all right now. Dr. Danahey, her pediatrician, will make that call on Thursday. AnnaSophia is being monitored so closley right now, that the doctors would notice if she is trending toward pulmonary hypertension.
We talked to Dr. Duster about her upcoming surgery. He said that they would like to hold off surgery for as long as possible, because the Ross Procedure in infants is an "awful surgery". I got the impression that her aortic valve is not good enough to use as a pulmonary valve. This would mean a graft that would not grow with her and would calcify over time. He said that she could be facing three or four more open heart surgeries.
In the meantime, Dr. Runciman is speaking with other doctors around the country about AnnaSophia's case to see what the options are. This includes the Cleveland Clinic to see if there's any chance her aortic valve can be saved/repaired. Please pray for wisdom for the doctors as they discuss AnnaSophia's case.
Blessings,
Steve and Mary
Tuesday, May 13, 2008
Monday, May 12, 2008
Happy Mother's Day!
Happy Mother's Day to all of you special mothers! AnnaSophia enjoyed her first outing to the zoo with her brother and sister. She enjoyed being outside, but did not really notice the animals. Ethan and Emily really enjoyed the Budgie Buddies from Australia. It was a really interactive exhibit, and the kids loved it. AnnaSophia slept in her stroller outside the exhibit with me. We were exhausted, and I was sunburned when we got home, but it was a really fun time. Steve also made the day special by cooking a very nice breakfast for the kids and I. For anyone who really knows Steve, this was quite an undertaking (Steve does not cook). Breakfast was wonderful, and I felt truly blessed. I thank God that He has blessed me with three wonderful children and a really great husband.
Mary
Children are a gift from the Lord;
babies are a reward.
Psalm 127: 3
Mary
Children are a gift from the Lord;
babies are a reward.
Psalm 127: 3
Monday, May 5, 2008
Growing up is hard to do
AnnaSophia has had an eventful week. She is using her hands so much more. She is absolutely thrilled that she can put them in her mouth, but with great power comes great responsibility. She is able to control her hands enough to pull her canula out, but with that, she also gave herself a corneal abrasion. Wednesday, April 30th, she had an unplanned visit to the pediatrician. We decided to do her four month well check at that time. Deveopmentally, she is right on target. She weighed in at 12 lbs. 3 oz. and is in the 25th percentile. It is amazing how good she looks. She doesn't look like an infant with heart failure. Dr. Danahey decided to keep her on oxygen, because she did not want her to end up with pulmonary hypertension.
I also spoke with the Cleveland Clinic and was given a lot of information. Statistically, their reported outcomes look really good. I will speak with the cardiologist on Monday regarding Cleveland. She will also have another EKG and Echo.
AnnaSophia continues to amaze us with how well she fares with the circumstances handed to her. She is a happy, laid back baby. I had to put an antibiotic eye salve in her eye twice a day for her corneal abrasion. The first time I put the salve in, she laughed when the ointment touched her eyeball. She is such a joy, and I thank the Lord for her daily. He has blessed our entire family with her precious little life. We all continue to lean on the Lord for all of our strength. Thank you everyone for your continued prayers for our AnnaSophia.
Mary
I also spoke with the Cleveland Clinic and was given a lot of information. Statistically, their reported outcomes look really good. I will speak with the cardiologist on Monday regarding Cleveland. She will also have another EKG and Echo.
AnnaSophia continues to amaze us with how well she fares with the circumstances handed to her. She is a happy, laid back baby. I had to put an antibiotic eye salve in her eye twice a day for her corneal abrasion. The first time I put the salve in, she laughed when the ointment touched her eyeball. She is such a joy, and I thank the Lord for her daily. He has blessed our entire family with her precious little life. We all continue to lean on the Lord for all of our strength. Thank you everyone for your continued prayers for our AnnaSophia.
Mary
Sunday, April 27, 2008
April 25th Cardiology appointment
Thank you for everyone who has kept tabs on our family over the last several months. We all appreciate the prayers more than we can express. AnnaSophia received her last Synagis injection for RSV last Tuesday. It seems that the cases of RSV in Colorado Springs has significantly decreased, and she will not need anymore injections until October. She continues to gain weight at a steady pace, 11lbs. 12oz.! The cardiologist is amazed at her weight gain and how healthy she looks. She charmed everyone in the office with her smiles and cooing. If it were not for her oxygen, someone looking at her would never know that she has serious issues with her heart.
Now for the bad news. Her echo on Friday showed that her heart function is not normal, in fact, quite bad. Her left ventricle is still having to work too hard. It has now caused a leak in her mitral valve. The aortic valve is a bit leaky, but that was to be expected after her recent heart cath. The aortic valve is the culprit causing the issues with her poor heart function. Also, the portion of muscle in her ventricular septum (VSD repaired with gortex) is becoming increasingly narrow. This is a huge problem that is only correctable with surgery. The plan was to help AnnaSophia make it into her teen years before she needed a valve surgery, but now everything has been moved up. It looks as though she could require surgery as soon as a couple of months from now to a couple of years from now. I personally feel that as quickly as things change with her heart, we are probably looking at major surgery sooner than later.
The cardiologist and I spoke about doing the Ross Procedure at the same time that her septum is repaired. The hard part right now is finding a surgeon who can do the Ross Procedure. It is a very complicated surgury, and only a few surgeons perform it. The other issue is that a good Ross is very good, but an ok Ross is very bad. Instead of one bad valve, she could end up with two bad valves. Our cardiologist is looking for the surgeon who seems to have the best outcomes for us. The best Ross surgeon in the world was working at the Cleveland Clinic, but has since retired. His surgical team is still in tact at Cleveland, so efforts are being made to contact them.
This is a really hard time for Steve and I. If she has surgery in Cleveland, Steve will be able to be there for the initial surgery, but will need to return to work quickly. It will be better for our other children, Ethan and Emily, if Steve remains in Colorado Springs during AnnaSophia's recovery. We also have some insurance benefits for out of network providers, but there will be a tremendous out of pocket cost for us.
There is a surgeon at Denver Children's who has experience doing the Ross Procedure, but not the same level of experience as the team in Cleveland. We have had the highest level of care at Denver Children's and have been so impressed on many different levels, but when it comes to the life of our infant, we would like to have the best. I can't help but think that if we went to Denver for her surgery, and she didn't make it, we would be kicking ourselves for not attempting to give her the best options for survival.
At any rate, Steve and I are very emotional right now. We know that she is the Lord's child, and that He loves her more than we do. We are just very scared for her. I have continuous butterflies in my stomach and flutters in my heart when I think about the road ahead for her. We need to move forward before irreversable damage occurs to her heart. We pray for wisdom in the choice of doctors for her, and that the Lord will make a way for her care. God is good, and we continue to trust in Him.
I look up to the hills,
but shere does my help come from?
My help comes from the Lord,
who made heaven and earth.
Psalm 121
Mary
Now for the bad news. Her echo on Friday showed that her heart function is not normal, in fact, quite bad. Her left ventricle is still having to work too hard. It has now caused a leak in her mitral valve. The aortic valve is a bit leaky, but that was to be expected after her recent heart cath. The aortic valve is the culprit causing the issues with her poor heart function. Also, the portion of muscle in her ventricular septum (VSD repaired with gortex) is becoming increasingly narrow. This is a huge problem that is only correctable with surgery. The plan was to help AnnaSophia make it into her teen years before she needed a valve surgery, but now everything has been moved up. It looks as though she could require surgery as soon as a couple of months from now to a couple of years from now. I personally feel that as quickly as things change with her heart, we are probably looking at major surgery sooner than later.
The cardiologist and I spoke about doing the Ross Procedure at the same time that her septum is repaired. The hard part right now is finding a surgeon who can do the Ross Procedure. It is a very complicated surgury, and only a few surgeons perform it. The other issue is that a good Ross is very good, but an ok Ross is very bad. Instead of one bad valve, she could end up with two bad valves. Our cardiologist is looking for the surgeon who seems to have the best outcomes for us. The best Ross surgeon in the world was working at the Cleveland Clinic, but has since retired. His surgical team is still in tact at Cleveland, so efforts are being made to contact them.
This is a really hard time for Steve and I. If she has surgery in Cleveland, Steve will be able to be there for the initial surgery, but will need to return to work quickly. It will be better for our other children, Ethan and Emily, if Steve remains in Colorado Springs during AnnaSophia's recovery. We also have some insurance benefits for out of network providers, but there will be a tremendous out of pocket cost for us.
There is a surgeon at Denver Children's who has experience doing the Ross Procedure, but not the same level of experience as the team in Cleveland. We have had the highest level of care at Denver Children's and have been so impressed on many different levels, but when it comes to the life of our infant, we would like to have the best. I can't help but think that if we went to Denver for her surgery, and she didn't make it, we would be kicking ourselves for not attempting to give her the best options for survival.
At any rate, Steve and I are very emotional right now. We know that she is the Lord's child, and that He loves her more than we do. We are just very scared for her. I have continuous butterflies in my stomach and flutters in my heart when I think about the road ahead for her. We need to move forward before irreversable damage occurs to her heart. We pray for wisdom in the choice of doctors for her, and that the Lord will make a way for her care. God is good, and we continue to trust in Him.
I look up to the hills,
but shere does my help come from?
My help comes from the Lord,
who made heaven and earth.
Psalm 121
Mary
Sunday, April 13, 2008
Feeling better!
Little AnnaSophia is doing much better since her heart cath. She had a hard time for the first 24 hours after her procedure. Thursday, my best explanation would be that she had the wind knocked out of her. She was pretty droopy all day. Friday, she turned the corner, just in time to see the cardiologist. Her echo showed that the ballooning of her aortic arch and aortic valve accomplished what the doctors intended to do. The left ventricle looks much better, but the pressure gradient in her aorta is up. That is generally not a good thing, but in her case, her heart function is much better. He said that if she were 20 years old, he would not be happy with the results, but at her age, he is overall pretty happy.
She was started on the drug Propanalol, a beta-blocker, to slow down her heart rate a little. She was running in the 140's before her procedure, and now she is running in the 160's. Still, not as bad as when she had JET, but it needs to be managed. Because of her small femoral arteries and poor circulation in her lower extremities, she will be starting aspirin therapy to thin her blood and, hopefully, increase blood flow.
The doctor warned that the Propanalol could cause her to become drowsy and sleep more. The interesting thing is that she was so exhausted from her poor heart function and anemia prior to her surgery, that she is so alert now. Even the new drug can't seem to keep her down. Before her procedure, she was awake for about 4 to 5 hours a day. Now, she has more of a normal wake and sleep pattern for a baby her age.
AnnaSophia is also taking an iron supplement for her anemia. The other amazing thing is that she is so pink now. Her little nail beds are pink, her feet are pink, and she just looks beautiful. I had noticed that she was pale before her procedure, but I didn't know what was causing it. Praise God for pink babies!
She will most likely require another heart cath within the year to keep her valve operating well. There is a concern for the muscle tissue beneath the valve. It has narrowed and is in the way of the bicuspid valve. The only way to fix this is through another open heart surgery. We just pray that as she grows, this problem will resolve itself, rather than become more of a problem.
I know this is a lot of information, but there is also more. As I research options for her valve surgery, I will report what the doctor and I have discussed. Right now, we are joyful and optomistic about her recent outcome. Thank you to everyone who has prayed for our little miracle girl. We appreciate all of the intercession on her behalf.
Shout for joy to the Lord, all the earth.
Worship the Lord with gladness;
come before him with joyfull songs.
Know that the Lord is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the Lord is good and his love endures forever;
his faithfulness continues through all generations.
She was started on the drug Propanalol, a beta-blocker, to slow down her heart rate a little. She was running in the 140's before her procedure, and now she is running in the 160's. Still, not as bad as when she had JET, but it needs to be managed. Because of her small femoral arteries and poor circulation in her lower extremities, she will be starting aspirin therapy to thin her blood and, hopefully, increase blood flow.
The doctor warned that the Propanalol could cause her to become drowsy and sleep more. The interesting thing is that she was so exhausted from her poor heart function and anemia prior to her surgery, that she is so alert now. Even the new drug can't seem to keep her down. Before her procedure, she was awake for about 4 to 5 hours a day. Now, she has more of a normal wake and sleep pattern for a baby her age.
AnnaSophia is also taking an iron supplement for her anemia. The other amazing thing is that she is so pink now. Her little nail beds are pink, her feet are pink, and she just looks beautiful. I had noticed that she was pale before her procedure, but I didn't know what was causing it. Praise God for pink babies!
She will most likely require another heart cath within the year to keep her valve operating well. There is a concern for the muscle tissue beneath the valve. It has narrowed and is in the way of the bicuspid valve. The only way to fix this is through another open heart surgery. We just pray that as she grows, this problem will resolve itself, rather than become more of a problem.
I know this is a lot of information, but there is also more. As I research options for her valve surgery, I will report what the doctor and I have discussed. Right now, we are joyful and optomistic about her recent outcome. Thank you to everyone who has prayed for our little miracle girl. We appreciate all of the intercession on her behalf.
Shout for joy to the Lord, all the earth.
Worship the Lord with gladness;
come before him with joyfull songs.
Know that the Lord is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the Lord is good and his love endures forever;
his faithfulness continues through all generations.
Psalm 100
Mary
Wednesday, April 9, 2008
Going home!
The discharge process is underway! The doctors are pretty confident that the neurological symptoms have passed. Praise God! AnnaSophia is smiling again too!
The next step is to pray that she's O.K. once she's home and that there are NO emergencies! She will see her cardiologist in Colorado Springs on Friday for a follow-up echo and consultation.
Thanks to everyone for your continued prayers.
Steve and Mary
The next step is to pray that she's O.K. once she's home and that there are NO emergencies! She will see her cardiologist in Colorado Springs on Friday for a follow-up echo and consultation.
Thanks to everyone for your continued prayers.
Steve and Mary
Noon update for April 9
We offer our apologies for the delayed report -- lots of stuff happens here.
AnnaSophia had a rough night, including a shuddering episode that was similar to a mild seizure. One of the not-so-desirable side effects of catheter surgery -- especially one as invasive as the type that was performed on AnnaSophia -- is damage to the arteries leading to the brain. That damage can be temporary or permanent. We're obviously hopeful that any disturbance was temporary, and so far, it seems as though it is. Aside from a strange head bobbing issue earlier today, she seems to be doing better on the neurological front.
As a precaution, the doctors are keeping us here for a while longer while they monitor her neurological functions and review her latest echo. Speaking of which, we did receive word that AnnaSophia definitely has an issue with a muscle underneath the aortic valve. The muscle problem is causing a continuing murmur. This could rectify itself over time, or need to be corrected with another open heart surgery. She also has a recurrance of some heart rhythym issues. Please pray that this will subside and not require more surgery. AnnaSophia doesn't want to see the hospital again for a while!
So, that's the latest. Please continue to keep AnnaSophia and the entire family in your prayers.
Steve
AnnaSophia had a rough night, including a shuddering episode that was similar to a mild seizure. One of the not-so-desirable side effects of catheter surgery -- especially one as invasive as the type that was performed on AnnaSophia -- is damage to the arteries leading to the brain. That damage can be temporary or permanent. We're obviously hopeful that any disturbance was temporary, and so far, it seems as though it is. Aside from a strange head bobbing issue earlier today, she seems to be doing better on the neurological front.
As a precaution, the doctors are keeping us here for a while longer while they monitor her neurological functions and review her latest echo. Speaking of which, we did receive word that AnnaSophia definitely has an issue with a muscle underneath the aortic valve. The muscle problem is causing a continuing murmur. This could rectify itself over time, or need to be corrected with another open heart surgery. She also has a recurrance of some heart rhythym issues. Please pray that this will subside and not require more surgery. AnnaSophia doesn't want to see the hospital again for a while!
So, that's the latest. Please continue to keep AnnaSophia and the entire family in your prayers.
Steve
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