2nd Fetal Heart Echocardiogram Results

Whew! What a LONG day! I'm going to do my best to translate what the doc said, but it was hard to follow him at times! We were glad when he noted right off the bat that Liam was in the best possible position for the echo, and he was asleep, so he was able to get really good pictures of the most important things. The first thing he said when he came back into the room after interpreting the echo results was that he was encouraged.

If you'll recall the last echo showed Liam had borderline HLHS with small measurements on the mitral valve, aortic valve, a possible narrowing of the aorta (which might lead to coarctation of the aorta), and a possible VSD (hole in his heart). Today we were looking to see if any of these problems had corrected themselves. The primary thing the cardiologist wanted to see was that the left side of Liam's heart had continued to grow and develop.

So, the first thing he noted was that the left side of the heart still has both chambers (so we still have a 4-chamber heart). This is good, because if it hadn't grown or if one or both chambers had closed, we would have a full-blown case of HLHS. We are still looking at borderline HLHS, but now we've been given only a 30% chance that Liam will have full-blown HLHS at birth. The left side of his heart is still smaller than the right side, but is functioning.

His mitral valve is currently measuring 7 mm, and at birth, they want it to be at least 8mm. His aortic valve is currently measuring 4 mm, and at birth, they want it to be at least 4.5-5.0 mm. He said it is entirely possible that they can achieve that kind of growth over the next 6 weeks. This places Liam at the 5th percentile for both valves. That isn't ideal, but if they continue to grow, they might be functional at birth. The leaflets on his aortic valve are opening and closing normally, which is a good sign. IF these valves are functioning and measuring within acceptable limits at birth, the cardiologist will check them periodically to ensure they are functioning as Liam gets older. If they fail, they will need to be replaced at some point.

On to the aorta: We are most likely looking at a coarctation of the aorta (70% chance), and this would have to be fixed surgically within the first week of life. The best case scenario would be that they would be able to go in from Liam's side to fix the aorta and not have to put him on a bypass machine. If it's a more severe coarctation, they will have to do open heart surgery. We won't know until he's born how bad the problem is, because you can't see part of the aorta that might be a problem on a fetal heart echo. You have to wait and do an echo a few hours after he's born to get good pictures of that area of his heart.

The VSD (hole in his heart) has disappeared. At the last echo, he couldn't tell if there was a VSD or not. Today, he couldn't see any. He did say this only rules out a large VSD--a small or medium VSD might not be visible in a fetal heart echo.

Liam's heart problems now resemble a condition known as Shone's Syndrome much more than HLHS. That's a term used when a baby's heart is showing multiple issues but doesn't fit criteria for HLHS or another congenital heart defect. We won't know the extent of what Liam will need until he is born, but we do know we are looking at some type of heart surgery in the first week of his life (unless God intercedes and performs a miracle in the next 6 weeks, of course!).

The plan at this point is that Lisa will get to spend a few minutes cuddling with Liam in the OR right after the C-section, and then he will go with Bill and Dr. Liske's cardiology team to the NICU at VUMC. As soon as he's stable, he will be moved to the Vanderbilt Children's Hospital NICU, where he will have various tests to determine his exact diagnosis. Lisa will continue to recover at VUMC. Lisa is NOT happy about learning this, but it can't be helped. This means that Lisa will not see Liam for probably 24 hours after he leaves the OR. Granted, the two hospitals are connected by a walkway, but we joked that a golf cart was really called for to get from Lisa's room to the NICU at VCH.

Although we realize that it was necessary to tour the NICU to prepare ourselves for what lies ahead, it was a very difficult tour to take for both Bill and Lisa. We were actually doing pretty good after the echo appointment until we toured the NICU and all the areas we would be moving to and from and between during the first couple of weeks this baby is alive. Frankly, that was just depressing and overwhelming.

We are doing ok at the moment. We will post more updates as we remember more information. It's a lot to absorb and then try to explain to others, but hopefully we've made it as clear to you as it is to us. Please keep the prayers coming--we know God is providing the strength we need to both of us as we deal with each "next step" in this process.

Bill and Lisa

Tomorrow is our fetal echo...

We've been waiting since mid-April for tomorrow to come, and now I don't know if I'm looking forward to it or dreading it. I guess both. We are also supposed to be getting a tour of the NICU, which I know for sure I'm dreading! We are hoping and praying that God has healed Liam's heart. We will post an update to the blog as soon as we are able to do so tomorrow!

Bill's dad is recovering at home and is doing much better now. It appears as though the heart attack caused very little (if any) damage, and there were no blockages that required surgery. Thanks to all of you who expressed concern and prayed for him!

Updated prayer request for this week:

1. PRAISE that God has given us the technology to see what Liam's heart looks like.
2. PRAISE that God has given us the strength to make it this far.
3. PRAISE that Lisa continues to have good maternal health during this pregnancy.
4. PRAISE that Bill's father is feeling better and recovering at home.
5. That Liam will cooperate and be in a good position so the doctor can see his heart clearly.
6. That God will give us the strength to hear the update the doctor has to share with us.

Once again, we find ourselves overwhelmed by the number of people who are praying for us. Thank you all so much!
Bill and Lisa

"For the Lord is good and His love endures forever; His faithfulness continues through all generations." - Psalm 100:5

We have a C-Section date!

Wow! What happy news! Liam will be here August 9. It's so nice to have an official date when we know we will KNOW exactly what we're facing. I guess that's one advantage to knowing in advance you'll have a C-section: There's reduced worry about going into labor at an inconvenient time (although clearly that could still happen) and you can prepare in advance for your baby's arrival.

It has been an extra-crazy week here so far, which is why I didn't post an update yesterday. Those of you who are praying for us, please add Bill's dad to the list. He was admitted to the hospital on Friday night with pneumonia and has since had a heart attack and congestive heart failure. He seemed to be doing better yesterday and we are hoping he was moved out of ICU to a private room last night. I'm hoping to go check on him in a little while. He will be having more tests and procedures tomorrow to determine how much damage the heart attack did to his heart.

Next week is a big week for us: We will be having the 34 week fetal echocardiogram done at the pediatric cardiology lab on June 28. We are really looking forward to hearing how Liam's little heart is developing, and we are hoping and praying for good results!

This week's prayer requests:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that Bill's dad appears to be stablizing and recovering.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks,
Bill and Lisa

Celebrating our anniversary today!

No new or exciting news in the Jelly Bean department, and today we are taking time out to celebrate our 8th wedding anniversary. Hard to believe it's been 8 years!

We will hold over the same prayer requests from last week to today:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that we received the 2nd opinion report so quickly and that it looks more hopeful.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks so much for your prayers,
Bill and Lisa

"My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." Psalm 62:1-2

This week's update...

There are only a couple of new things this week. We did receive the report Dr. Gomez-Fifer at University of Michigan sent to Dr. Liske after reviewing his fetal heart echo and report. We haven't yet consulted with her (I need to schedule a time and just haven't done so yet), so most of the report was over our heads. We were hopeful that it APPEARS (based on our EXTREMELY limited knowledge) that her measurements were slightly better than Dr. Liske's, so that was encouraging.

Our insurance company denied our request to pay for the phone consult (probably a couple of hundred dollars at the most), which is ironic since they would be willing to pay for a trip to MI, for Dr. Gomez-Fifer to do another fetal heart echo, and for an office visit with her (probably a few thousand dollars). What can I say? Insurance companies are funny. I'll call our case manager and talk to her, but I think it's a futile effort because of the way our policy is written.

This week's prayer requests:

1. PRAISE for supportive people who call and e-mail "just to check in," send cards, and post comments to this blog. You make us smile, and we thank you!
2. PRAISE that we received the 2nd opinion report so quickly and that it looks more hopeful.
4. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa. This continues to be a big problem, especially for Lisa.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.

Thanks so much for your comments! They are so helpful and nice to read!
Bill and Lisa

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Proverbs 3:5-6