Welcome to Max's blog. First of all, I never thought that Amy and I would ever have a blog... if you know me very well, you'd understand why. Second of all, we don't have a clue what we're doing, but bear with us and I'm sure we'll end up with a fun, fancy blog with lots of pictures.
For a little bit of background, Max is our 2.5 pound baby boy that is currently hanging out in my wife's belly. Amy (wifey) is about 28 weeks along and is due July 20. Amy and I have been married for about 4 years and Max will be our first child. Up until last Tuesday (April 26), the pregnancy was going absolutely perfect. Amy never got sick, didn't have any weird food cravings, didn't have trouble sleeping, wasn't excessively sensitive or emotional (which was really good for me)....nothing. But last Tuesday, our world was turned upside down.
Last Tuesday, April 26, Amy went to her OB for a routine, 28 week appointment I say routine, but this was actually an extra ultrasound that was suggested by Amy's rheumatologist, but we fully expected it to be routine. Amy has Sjogren's Syndrome, which is an autoimmune disorder that she was diagnosed with at the same time she was diagnosed with Rheumatoid Arthritis. We knew there was about a 2% chance of women with Sjogren's Syndrome passing antibodies to the baby that can cause congenital heart block. Well, unfortunately, we fell within the 2%. Structurally, Max's heart looks ok at this point, but the electrical system of the heart has been damaged by these antibodies. So, Max was diagnosed with 2nd degree heart block on Tuesday. This means that the top part of his heart is not communicating with the bottom part of his heart effectively. Amy's OB set an appointment with a Pediatric Cardiologist last Friday at Vanderbilt Children's Hospital and we just hoped for the best.
We met with the Cardiologist last Friday and found out that Max's heart is actually worse than we thought and Max was diagnosed 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.
Not a lot of good news here so I'll just lay out the scenarios that we are now dealing with. They put Amy on steroids to hopefully help prevent any more damage. There have been no recorded instances where the steroids have reversed the progression but we are just hoping to maintain. There is the possibility that Amy will go full term and Max will get better on his own. Unfortunately, the likely scenario is that Max will go a bit early and have a pacemaker installed. As you could probably imagine, pacemaker surgery on a baby is complicated enough but it gets more and more difficult if he doesn't go full term. The decision for when and if he will have surgery will be determined once he's born. We also have to face a 20-30% mortality rate now, which is a bit unsettling to say the least. Amy will be monitored closely by a high risk OBGYN twice per week and will see the Cardiologist every 2 weeks. She 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 Amy to 36 weeks and then deliver by C-section. If at any time between now and then, Max looks like he is doing worse, he will be delivered then. Amy is now going to deliver at Vanderbilt and will have a team of excellent doctors prepared to take care of Max. 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 and is considered highly unlikely.
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.....hope he likes golf.
So, we 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 Amy will be able to carry Max to as close to term as possible (our first goal is to reach the 32 week mark but hoping to get to at least 36 weeks).
5. That when he is born, Max will be strong and recover well.
6. That God will give Amy and I strength and peace through this process.
Now, we want to be sure and point out a lot of positive things that we are very thankful for...
1. Other than the electrical part of his heart, Max is very healthy.
2. We have a lot of wonderful friends and family that have been incredibly supportive.
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. 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.
5. Although this problem is extremely rare, our Pediatric Cardiologist, was amazing and gave us a clear plan. We really liked her.
6. Our bosses are being very understanding and flexible with our schedules.
7. God has given us faith and we know He will not give us more than we can handle (with His help).
8. We have such faithful friends and family.
9. Amy and I have each other to lean on; we are not doing this alone.
10. If Max does have a pacemaker, he will always be prepared for "show and tell".
God has been so good to us through this process and has used this situation to strengthen our marriage and our personal relationships with Him. He has given us an amazing sense of peace and strength and a group of friends and family that will do anything for us. We are praying for a miracle and know that we serve a good and just God who will not give us anything we can't handle with His help. God has a plan for us and Max and it's amazing to see how he is already using Max to affect our lives and others. It has been an absolutely humbling experience to know that there are so many people rooting for Max and praying for our family. We truly want to thank you all for your prayers and support.As an update, we had our first OB appointment since our bad news streak of last Tuesday and Friday. Max's heart rate was 73 and scored an 8 out of 8 on the BPP (he studied). At this point, we consider that a win and a good visit...next appointment is Friday.