Tough afternoon on the 9th floor -- 4:15 p.m. update

We're now on the 9th floor with AnnaSophia, but she has been having a really tough time this afternoon. She has been extremely pale and very fussy/screaming. The nurse gave her another dose of morphine. She still has another two hours to go on the blood transfusion and has tubes/wires hanging off of her everywhere.

Mary was finally able to hold her a few minutes ago and that seems to be helping.

Please continue to pray for AnnaSophia tonight; that she starts getting some of her color back and is able to rest.

Taken a few minutes after the catheter procedure:

Taken at approximately 4:20 p.m. today (finally -- some rest for our little one):

Steve

Surgery complete -- met with the doctor

After more than 4 hours of surgery, AnnaSophia's procedure is done! The cardiologists used a balloon at two locations -- the aortic arch and aortic valve -- to relieve narrowing. Also, her hematocrit was very low, so she will be undergoing a blood transfusion over the next several hours.

The cardiologist is very pleased with the results. He feels that by fixing her "plumbing" a lot of her issues -- need for oxygen, paleness, overall energy level -- will improve drastically.

A picture of her femoral arteries showed that they were abnormally small. The doctor used the words "thread-like" to explain her condition. This is why it took them an hour and twenty minutes to get the catheter inserted.

Thanks to everyone for your continued prayers! If she handles the blood transfusion well and heals as expected tonight, she will likely go home tomorrow. The next 72 hours will be key as to the overall success level of the procedure. An echo will be performed tomorrow and then again on Friday.

Mary and I both feel like zombies, but we're anxious to see AnnaSophia soon. They haven't brought us back yet to see her.

A couple of pictures!

Mary took these a few days ago...

..

10:18 a.m. update -- catheter is in! Praise God!

I just received a call from the cath nurse at about 10:15 a.m. -- the catheter was successfully inserted! Praise the Lord! Thank you for the prayers. The surgeons are taking pictures of the aortic arch right now to determine next steps.

Steve

9:20am Update Prayers needed

We just received word from the nurse in the Cath Lab that they have not been able to start the cath yet, because they cannot get the second arterial line in. The doctor paged another physician to try to get the line in. It has been one hour and twenty minutes. We pray that the Lord will guide the doctor's hands, and that the next try will be successful. Please pray for our little girl. The doctor thinks that the stress on her left ventricle could be caused by the arch repair narrowing significantly. He is trying to fix this narrowing through the catheter. The other option is open heart surgery. We pray that the Lord will see this cath through with great success, so that she will not need another open heart surgery so soon.

Praise be to the Lord,
for he has heard my cry for mercy.
The Lord is my strength and my shield;
my heart trusts in him, and I am helped.

Psalm 28:6-7

Mary

Catheter surgery begins -- 7:50 a.m. report

We arrived in Denver last night and stayed at a local hotel since we had to be at the hospital very early this morning. AnnaSophia's check-in was at 6 a.m. today!

God has blessed us with an amazing little girl with a gentle and calm spirit. AnnaSophia couldn't nurse after 4 a.m., yet she was flashing smiles the whole time she was getting prepped for her catheter surgery. The Lord has filled her with His Holy Spirit and has used our little girl to show His grace. I am honored to have her.

She was taken back to surgery at approximately 7:45 a.m. We are expecting about a three to four hour surgery, with updates coming every hour. She'll go under general anesthesia and have a breathing tube.

The doctor who will perform the surgery told us this morning that he will be looking at two portions of her aorta. He will look at both the aortic valve and the surgically repaired portion of her aortic arch, which he believes may have narrowed like the valve has. It's possible that the aortic arch may be the larger contributor to the left ventricle issue Mary spoke of in the last update. If that's the case, the doctor may just attempt to enlarge the aortic arch instead of the valve. He doesn't want to touch the valve if possible, because he doesn't want to over stretch it and cause a leak.

Anyway, all of this is easier than it sounds. The truth is they're messing with areas of the heart that are extremely sensitive, not to mention the potential complications of entering a major artery with a catheter. Please pray that the Lord guides the surgeons through this procedure and that AnnaSophia comes out of it O.K. I'll try to post updates as we get them.

Last cardiology appointment

We intended to update the blog sooner, but out internet was down for days, so I apologize for the late update. AnnaSophia had a cardiology appointment on Friday, March 28th. She had an EKG, echocardiogram, and we repeated another 24 hour Holter monitor. The EKG looked normal except for some residual long Q T intervals. The doctor does not think this is a concern in that she does not have Long Q T Syndrome. This syndrome is actually quite dangerous, and we were relieved to know that this is not a concern for AnnaSophia.

The echo showed that the pressure gradient in her aorta had not changed, meaning that the aorta had not narrowed since her last echo two weeks ago. The bad news is that the left ventricle was enlarged, indicating that it is being adversly affected by the bicuspid valve and the aortic stenosis. After consulting with the interventionist, both cardiologists decided that it is prudent to proceed with the heart cath sooner than later. Monday, we were told that her procedure was scheduled for Tuesday, April 8th at Denver Children's Hospital. The plan is to gently stretch the narrow part of her aorta, relieving the narrowing. The doctors are attempting to make her bicuspid valve last through childhood. After she has finished growing, we will then need to replace her valve.

The good news is that the doctor called today to tell us that her 24 hour Holter was completely normal! We do find it amazing that despite her enlarged ventricle and bicuspid valve, she has no signs of arrythmia.

Please pray for AnnaSophia and her doctors that the cath procedure may go smoothly and accomplish what it needs to. We're hopeful that we can all be home again after a couple of days at the hospital. Also, pray for AnnaSophia's brother and sister. This has been so tough on them. They are very frightened and sad for their sister.

Steve and Mary