Please Pray for Max

Another very close friend of mine from college needs our prayers! Amy was a sorority sister of mine and we have remained close the last 5 years since we graduated. Her and her husband Tyler are pregnant with their first son Max and live in Franklin, TN. Here is whats going on in her own words:

I went to my OB for a routine, 28 week appt this week and found out that my Sjogren's Syndrome is causing problems in the baby. Sjogren's syndrome is an autoimmune disorder that I was diagnosed with at the same time as the Rheumatoid Arthritis. There is about a 2% chance of women with Sjogren's Syndrome passing antibodies to the baby that can cause congenital heart block. Well, unfortunately, this has happened. Structurally, his heart looks ok, but the electrical system of the heart has been damaged by these antibodies.

On Tuesday, Max was diagnosed with 2nd degree heart block. This means that the top part of his heart is not communicating with the bottom part of his heart effectively. They set us up with a Cardiologist appt on Friday and we just hoped for the best.

Tyler and I met with a Pediatric Cardiologist at Vanderbilt on Friday and we found out a lot more information. It's actually worse than we thought. She diagnosed Max with 3rd degree to complete heart block. This means the top part of his heart has completely stopped effectively communicating with the bottom part. His heart rate is in the 60's and 70's when it should be in the 140's. Also, the heart's rhythm is not normal.

So, the plan is... They put me on steroids to hopefully help prevent any more damage. I will be monitored closely by a high risk OBGYN once to twice per week and I will see the Cardiologist every 2 weeks. I will have frequent ultrasounds and echocardiograms in order to see if the baby's disease is progressing or if other problems are occurring. The goal is to get me to 36 weeks and then deliver by C-section. If at any time between now and then, if Max looks like he is doing worse, he will be delivered then.

I will deliver at Vanderbilt and the baby will immediately go to the NICU for care. He will most likely need a pacemaker and they will evaluate at that time when would be the best time to do the surgery. We probably won't really know until that time. He will be in the NICU for at least a few weeks, but that also depends on a lot of factors.Because of the damage that's already been done, if more damage occurs, there is a small chance that Max may need a heart transplant. Right now that's not the focus.

If all goes well, Max's quality of life should be good. He will always have a Cardiologist and will most likely have a pacemaker. He will have to be careful not to do anything to get his heart rate too high. This probably includes playing contact sports. We are hoping he will be a heck of a golfer though!

So, Tyler and I would really appreciate if everyone would pray for us and for baby Max. Please pray specifically for...

1. A better than expected outcome. Miracles do happen and we certainly do believe that.

2. That the steroids will help prevent further damage to Max's heart instead of causing more complications.

3. That complications, in general, will be minimized.

4. That I will be able to carry him to as close to term as possible. (at least 36 weeks).

5. That when he is born, Max will be strong and recover well.

6. That God will give Tyler and me strength and peace because we are going to need it.

Now, I want to be sure and point out a lot of positive things that we are very thankful for...

1. God is giving us a baby boy and we love him so much already.

2. We have a lot of wonderful friends and family to support us.

3. We discovered this problem when we did and we were able to see a Pediatric Cardiologist within 3 days. 3 days was long enough to wait. I cannot imagine having to wait longer, which is usually the case.

4. I don't have to be admitted to a high risk OB unit.

5. We live within a few miles of Vanderbilt Medical Center and we have easy accessibility to it. I cannot imagine how much more complicated things would be if we did not live in an area with such wonderful healthcare.

6. Although this problem is extremely rare, our Pediatric Cardiologist, seemed very competent and clearly gave us a plan. We really liked her.

7. Our bosses are being very understanding and flexible with our schedules.

8. We are hopeful that Max will have good quality of life.

9. God has given us faith and we know He will not give us more than we can handle.

10. We have such faithful friends and family.

11. Tyler and I have each other to lean on; we are not doing this alone.

Here is a picture of Amy and I back in December when we had our girls' weekend so that you can put a face with the name. I thank you on their behalf for your prayers!!

I did want to update on the other friend that I had recently asked prayers for, Jessie and her baby boy Thatcher. His liver transplant went well and although he is still having to stay at the Ronald McDonald house in Pittsburg, they are only having to go in once a week to the clinic for checkups. They are hoping to come home this next month!!! Praise the Lord! She also got to see her sweet older girl Amelia who recently got to visit. Thatcher is now 9 months old and cuter than ever! Check them out at: http://bjandjessielink.blogspot.com/

1 comment:

Muesch Family said...

First of all, thank you to our wonderful friend, Lindsey, for helping get our story out to people so quickly. That was so generous of her to offer to post our story on her family's blog. We definitely need all the prayers we can get!

This past week has been the most difficult of our lives, but I have never felt so much support from friends, family, and even strangers. I cannot tell you how much it means that people are praying for our sweet baby Max and for Tyler and me. I cannot believe that there are people praying for us that don't even know us! I cannot explain it, but I want you to know that we can feel your prayers working already. Even though this is not an ideal situation, God has given us a lot of peace about it. Thank you again for all your comments, support, and prayers. We have created Max his very own blog and will be updating it frequently. We would love for you to follow it and forward it to whoever you think might be interested. The more prayers, the better, right?! More to come, but we did our first posting tonight! Visit it at http://maxmuesch.blogspot.com