Premature diagnosis...no virus prompted this hospital stay

Unfortunately, a virus is not the cause of AnnaSophia's latest hospital stay, but rather a worsening heart condition. Needless to say, she is still in the hospital and will likely be there through tomorrow, if not longer.

AnnaSophia is in congestive heart failure, which has caused significant fluid retention around her heart, lungs and other body organs. The fluid retention had gotten so severe that she was displaying virus-like symptoms (nausea, vomiting, diarrhea, etc.) over the last few days. We've learned a lot over the past few months, but there remains a great deal that we still do not know. We knew something was wrong, but we had no idea it was this.

That's the bad news...the good news is that since the doctors started AnnaSophia on Lasix -- a drug to relieve fluid retention -- she is slowly improving. She's also on oxygen, a higher dosage of heart medication and remains on an IV; all of which are helping. An echocardiogram is scheduled for tomorrow morning so the doctors can get a better look at her heart. That will be key to giving us some answers as to next steps.

Additionally, the cardiologist feels AnnaSophia's congestive heart failure is relatively low on the severity scale at the moment and can be managed with medication; for now. We were very concerned earlier today that we would be making a trip to Denver for a second open heart surgery. So, we're grateful that it looks like surgery is not required at this time. I'm emphasizing "for now" and "at this time" because the immediate future is very uncertain. I do not want to mislead anyone as to what is to come. We can offer no assurances, only that AnnaSophia is in God's very capable hands and that is where we find comfort.

Even though we've known for a while that another surgery is on the horizon, it is nearly unfathomable to send her to be cut open again, not knowing if she will be strong enough to survive. The fragile nature of AnnaSophia's condition has really hit home with this latest hospital stay.

Once again, I humbly ask for your prayers as we journey through this latest challenge. Please pray for strength for Mary, and that her and AnnaSophia have a peaceful night. Also, pray that the echocardiogram will reveal a clear picture for the doctors so they can chart a course for next steps.

Steve

A viral infection...

...has landed our little AnnaSophia back in the hospital. For those of you who are still following the blog, we thought we'd offer this update and humbly request prayers for AnnaSophia.

After nearly a week of not eating well, bouts with diarrhea and, most recently, vomiting, we decided to take AnnaSophia to the hospital Sunday evening to be checked out. To make a long story short, she was admitted to Memorial Central at about 11 p.m. Sunday for dehydration and some sort of a viral infection. Apparently, she is negative for RSV, which is great news.

The current worries include the fact that her oxygen levels have been relatively poor (low to mid 80s), most likely due to the viral infection. Her heart seems O.K. so far, but obviously, these infections put stress on her heart condition.

AnnaSophia will remain at Memorial with Mary until the doctors are confident she is nursing well and can hold down her heart medications.

Please pray for strength, rest and wisdom for us (especially for Mary, as she is at the hospital with AnnaSophia), guidance for the doctors who are caring for AnnaSophia, and that the Lord grants His healing touch on AnnaSophia so she can return home soon.

Steve

"Dragging Our Feet"

AnnaSophia's cardiology appointment on Friday May 30th went well. She weighs 13 lbs. 2 oz. Her echo showed that she is stable. Her heart has not improved, but it hasn't gotten worse. Praise God!!! He is so good. Even Dr. Runciman said that she does not look like a baby with heart failure. He increased her Captopril and kept all of her other meds the same. He said the plan is to "drag our feet" for as long as possible concerning surgery. It is a delicate balance sometimes to put off surgery as long as one can without causing irreversible damage to the heart. I have confidence that the Lord is sovereign. He knows what is best, and He is in charge. AnnaSophia is a little miracle. She puzzles the doctors at times, but we know that her heart is working exactly as the Lord intends it to at this moment. She is truly a gift from the Lord.

Mary

A reason to celebrate!

AnnaSophia is off of her oxygen!!!! She recently had an appointment with her pediatrician Dr. Danahey. Her last pulse ox showed that she was at 96% on room air. Dr. Danahey gave the order to stop the O2. We are so thrilled that we do not have to trip over tubing, and AnnaSophia is glad that she no longer has a canula in her nose. She is on target developmentally and is doing everything that a normal four month old should be doing. Just the other day, she decided that she wanted to roll over every time she was laid on her back. Dr. Danahey also checked her hematocrit, and her iron levels seem good. We can now take her off of the iron and just give her an infant vitamin with iron.

We are enjoying this little gift from God so much. She is starting to think that Emily and Mommy are really funny and laughing out loud at our antics. Ethan loves her so much and kisses on her all the time. It's hard to believe that she has heart failure--she just looks so good. We thank the Lord for every success no matter how small or large.

Thank the Lord because he is good.
His love continues forever.

Psalm 118:1

Mary

Monday's cardiology appointment

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

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

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