Thursday, May 26, 2011

Memphis Baby Shower Last Weekend

Last weekend a few of my college friends hosted a baby shower for us and IT WAS AMAZING! It was more than we deserve and I had so much fun! We got so many really great gifts from friends and family and it was really nice to visit with so many women that I don't get to see on a regular basis. Here are a few photos...

The hostesses - Lindsey, Meg, Natalie, and Alicia
My mother-in-law, Dawn, and my mother, Jan
also known as DeeDee and Nana
Tyler's sisters: Brooke, Sara, and Hannah, and Dawn
I am totally impressed with this stuff!
Lindsey had this sign made to hang on the delivery room door and then in Max's room. I love it!
The cupcakes were delicious and beautiful!
Yummy food! - I had 2 plates :)
What a cute diaper cake!
Max's Toy Box
Owl Play Gym
Really sweet Baptism/Church outfit
Lots and lots of awesome gifts

Tyler's grandma made the beautiful yellow blanket in the top right corner

Celebrating 32 Weeks!!

Today we are celebrating getting to 32 weeks! When Max was diagnosed with heart block at 28 weeks, I didn't know if we were even going to make it to 32 weeks. It seemed so far off and we were very scared. It was very obvious to us that our doctors were very nervous too. I cannot believe it's been a month and we've made it to our first goal. Why is getting to 32 weeks important? This is a critical point to get to because most of the organs and systems are pretty mature at this time and he has a great chance at survival. Prior to this point, it can be a little trickier. While Max still has a lot of growing to do, he will spend this last several weeks gaining weight and growing. His lungs are also mature due to the steroids. So, needless to say, we are thrilled to get to this point!

As far as appointments this week, we had 2 BPPS and also met with the cardiologist at Vandy. The BPP on Monday went very well (we discussed it in our previous post). Then we met with Dr. Vera, Max's pediatric cardiologist, on Wednesday. The photos are of the tech that usually does our ultrasound and echo and of Dr. Vera. The tech does his thing first, and then she always comes in and takes some additional pictures. It was a great appointment and Dr. Vera said she is VERY pleased with his progress. We asked her about 2nd degree versus complete heart block, and she feels strongly that Max has complete heart block. That's ok though, because the treatment is the same and Tyler and I feel sure he is going to be ok either way. She said he appears to be very stable and there doesn't seem to be any additional damage to his heart. This may be partly due to the steroids, but Tyler and I know that all your prayers are making the biggest difference in his progress and health. We cannot thank you enough for that! Looking back to a month ago, we are now in such a better place. I now understand how concerned Dr. Vera was about Max initially, and rightfully so. We can see how much more confident she is in his condition now that he seems to be more stable, and that is very comforting to us. She agreed with our high risk OB, that as far as Max keeps up the good work, we will plan on delivering at about 36 weeks. This will be sometime around the last 2 weeks in June.

Then, today we had another BPP and Max did great. He is very active and his heart rate ranged from 58-70. It has consistently been in the 60's and 70's all week, which is very encouraging to us since it's not been that high since he was diagnosed.

So, to summarize, this week has been a great week with a lot to celebrate!! We are so thankful for each small blessing and are trying not to take anything for granted. We continue to feel very "lifted up" by all of you everyday and that is so important. There is not a day that goes by that multiple people don't ask about Max and how he's doing. We love seeing responses on the blog, also, and all of your prayers are making a huge impact. Thank you!!

Monday, May 23, 2011

Cautiously Ecstatic

As Amy and I sat in the waiting room for yet another BPP today, I won 2 games of solitaire on my cell phone. I've been in a bit of a waiting room solitaire slump, so I had a feeling today was going to be a good day... and my feeling was right.

Things seemed to be going as usual at first. Max was extremely active as always and practicing his karate moves on the ultrasound tech. As we started the BPP, we always ask if there are any signs of hydrops...and once again, there were none. After checking for hydrops, the ultrasound tech usually checks Max's heart rate and tells us right away, but she didn't tell us today. As she continued the BPP, Max continued to show signs of a perfectly healthy baby (other than his heart condition) and he passed again with flying colors. It was another weigh day, and Max continues to grow...he's up to 3 lbs., 2 ozs. So, as we wrapped up the BPP, I was curious about Max's heart rate but assumed it was lower than normal since she didn't tell us. So, I asked her what it was....drum roll please. And to find out, his heart rate was up and ranged from 69 - 76 beats per minute. Considering his heart rate has consistently been ranging in the upper 50's to very low 60's, this was really exciting news...and completely unexpected.

When we go in for the BPP's, we typically only see the ultrasound tech. Well, today the radiologist wanted to come down and check on Max as well. This is my first time to meet the radiologist, but Amy tells me he is very highly esteemed and has written several books. This is also the radiologist that diagnosed Max with 2nd degree heart block a few weeks ago when Amy thought she was going in for a standard ultrasound. As he is looking at Max's heart and taking measurements with the ultrasound wand thingy, he very casually tells us he still thinks Max has 2nd degree heart block and not complete block. What?! That, of course, was our first reaction. It's funny, you would think we would be jumping up and down, but that's where the cautiously ecstatic comes into play. Most people would say cautiously optimistic, but who are we kidding...we're crazy excited about the outcome of today's appointment.

Max gained weight, his heart rate was up and Amy is almost 32 weeks. We couldn't have prayed for a better appointment....and we certainly have prayed. At this point, we're not exactly sure what degree heart block Max really has and to be completely doesn't matter. What matters is that Max is continuing to develop and grow and we're getting closer to the next goal of 36 weeks. We won't really know the long-term effects of the heart block until Max is born. The treatment plan for 2nd degree and complete heart block are the same. So, nothing has really changed at this point but there are signs of real improvement, so like I said...we're cautiously ecstatic.

I truly believe in the power of prayer and I know that we have so many people praying for Max and our family. And it's because of your prayers, and ultimately God's grace that Max is continuing to develop. We meet with the cardiologist on Wednesday and we pray that Max's condition is improving.... and we ask that you pray for that as well. But if we find out that Max is still in complete heart block, it's important to understand that we will be totally fine with that as well. God has truly given Amy and I this unexplainable sense of peace and strength that continues to motivate us each day. And at the end of the day, we just want the opportunity to meet and raise Max...pacemaker and all. Thanks for all your prayers and please, please continue to pray for Max and our family.

Wednesday, May 18, 2011

We met the high risk OB today...

Tyler and I were excited about this appointment today because we met the doctor that will be delivering Max at Vandy. Her name is Dr. Bennett and she is an Obstetrician that monitors and manages care for high risk pregnancies. We were very impressed with her and she made me feel extremely comfortable. She seems to be a very sweet lady and she gave a thorough explanation of her plan of care and what we can expect from now through delivery. I now feel like all the "key players" are involved and everyone is on the same page. She said tomorrow my regular OB (Dr. Mackey), our pediatric cardiologist (Dr. Vera), and the high risk OB (Dr. Bennett) will all have a conference call to try to plan when would be the best time to deliver Max. Dr. Bennett seemed very confident that we can wait until 36 weeks to deliver as long as the baby does not become more compromised. It will be very interesting to see what all three doctors decide upon.

Max is looking good today, and he showed off during the ultrasound and echo, as usual. I warned the ultrasound tech that he likes to give them a hard time when they try to get all their measurements. He didn't disappoint. He also gave us some cute yawns while we were checking him out. We saw those sweet big lips again :) His heart rate was in the 60's and he now weighs 2 lbs 14 oz. He has gained 5 ounces in the last week or so. We are pleased with that.

Mom went with us to the appointment today, which was really nice. I wanted her to become familiar with where we will be within Vandy since it's such a huge place. We toured the NICU after the appointment so Mom and Dad will know where Max will be. Overall, it was a really good day. We have another BPP tomorrow; we will keep you updated.

Saturday, May 14, 2011

"Jesus Calling"

These past 3 weeks have, by far, been the most difficult Tyler and I have ever been through. But I think I can speak for both of us when I say that we have also never felt so close to God and so comforted by His presence. He has given us amazing strength and peace to help us deal with our situation.

When we found out that something was wrong with Max, our sweet friend, Meg, brought me a daily devotional called "Jesus Calling" by Sarah Young. She thought it would be helpful for us to read daily together and reflect upon. She was right! I cannot speak highly enough about this devotional. If you don't have it, you need to get it! It can apply to any situation and it will make you think totally differently about your life and your problems and the way you live your life. If you will give it a try, I promise it will change your life.

Here is today's devotion...
"I am a mighty God. Nothing is too difficult for Me. I have chosen to use weak ones like you to accomplish My purposes. Your weakness is designed to open you up to My power. Therefore, do not fear your limitations or measure the day's demands against your strength. What I require of you is to stay connected to Me, living in trusting dependence on My limitless resources. When you face unexpected demands, there is no need to panic. Remember that I am with you. Talk to Me, and listen while I talk you through each challenging situation. I am not a careless God. When I allow difficulties to come into your life, I equip you fully to handle them. Relax in My presence, trusting in My strength."

Luke 1:37; 2 Corinthians 12:9

Over these last few weeks, I have learned a lot of things about myself and Tyler. I have learned that I like to always be in control of every situation and that I like to plan every detail. Well, life just doesn't really work that way. I have learned that God has a purpose and a plan for us and I need to stop trying to control everything. It actually seems really silly that I always thought I had so much control over my life, because actually, I have no control at all. God is controlling it all. I just have to learn to let go and trust Him. I know that His plan for us is so much more important than my own.

It have really struggled with the fact that there is absolutely nothing I can do to make Max better. Tyler has to keep telling me that over and over again; and he's right. All we can do is pray, trust God, and wait. At first, that was extremely frustrating for me because, like I said, I like to control situations. I'm learning that I have to let go. Once I realized that, I felt such immediate relief. I realized we don't have to do this on our own. Now I do also want to mention that I do not always feel this way. I've had my fair share of angry moments and moments of extreme frustration and anxiety. But I have a very supportive husband, and awesome friends and family that keep reminding me of what I'm supposed to be focusing on. Mom and I talk about the daily reading almost everyday and she is constantly reminding me to just let go.

We know that God has chosen us to be Max's parents because we can handle his health issues (with His help). We will do whatever we need to do to get him the best care possible. It is amazing how much we love that little squirt already before we have even met him. I also wonder if maybe God led me into nursing as a profession so I would be better prepared to take care of Max. Just some thoughts.

Anyways, I would really suggest buying "Jesus Calling." If you already have it, buy it for someone else. It may be the best gift you could ever give them and it will only cost you about $12.

Thank you for your continued support and prayers!

Good Report from the Cardiologist on 5/13


Friday was a big day. We went back to the cardiologist for the 1st time since Max was diagnosed with complete heart block two weeks ago. Believe it or not, we were actually really excited about this appointment since our cardiologist is the only doctor monitoring Max that has an in depth understanding of his condition. Also, we knew that she was going to take a detailed look at his heart and would be able to tell us if there was further deterioration. At the end of the day, this was a really great appointment and we consider it another win. There are currently no signs of further deterioration and the steroids don't seem to be having any negative side effects on Max.

Here is a quick technical update to the current condition of Max's heart: (1) heart rate was 62 (2) valves show signs of minor leakage (3) it appears there has been some damage to the wall of the heart. But, this is no different that 2 weeks ago and we really won't know the extent of the damage until Max is born.

Also, we got to tour the NICU and the labor and delivery and postpartum floors at Vandy. Amy works at Centennial and knows the majority of the nurses, doctors and managers on floors. So, now that Max is being delivered at Vandy, she is going from a very familiar, comfortable facility (Centennial) to an unfamiliar place (Vandy). It was a good tour and it gave Amy a lot of comfort that there are so many similarities between the two places. We decided Max has the best gig. He gets a nice, private room to himself and his own personal nurse. His bed looks sort of like a space ship...I liked space shuttles as a kid, so I'm sure he will like it too.

So, we will continue to have 2 BPP's per week and we're going to see the high risk OB at Vandy next week. We look forward to meeting the doctors that will be delivering Max.

Thanks again for all your prayers and we ask that you continue to pray for our family.

Monday, May 9, 2011

Another Good Report and Some of Max's Favorites

We went to the OB again today. Max nailed another BPP...8 out of 8 and no sign of hydrops. Apparently, high drops are early signs of heart failure, so they look for this every time we have an ultrasound. His heart rate was 59, which isn't spectacular. But for a kid with half the heart rate of a healthy baby, he is incredibly active and is already proving to be a tough fighter. As soon as the ultrasound tech pushed on him with the wand thingy, he starts punching and kicking back and flipping around. It doesn't make the ultrasound tech's job easy, but it makes us feel a lot better to see him so active.

Max weighed in at 2 lbs., 9 oz., which is 9 oz. more than the last weigh-in 2 weeks ago. We'd like him to get to 6+ pounds when Amy delivers and we hope she get to 36 weeks (Amy will be 30 weeks on Thursday). Technically, Max is a little guy and we were told he falls into the 25th percentile...probably due to his heart condition. To be honest, percentages mean nothing to me at this point. God is in complete control of this situation... and always has been. It's funny how scary times like these are a reminder of how little we actually control. All that said, another week down and no further deterioration = win.

We're really looking forward to our appointment with the pediatric cardiologist this Friday. She will perform an echocardiogram aka "echo". I'm not 100% sure what all an echo entails, but I know the cardiologist will take a detailed look at the heart and check blood flow and heart valves and look to see if the antibodies are attacking the structure of the heart. This will be only the 2nd meeting with the cardiologist, so we're anxious to see if Max's heart has changed for better or worse or if the steroids are having an impact on anything other than Amy's emotions (completely kidding). Speaking of Amy, I need to give her tons of credit. She is without a doubt the strongest person I know and has handled this situation better than I could ever have imagined. She couldn't be a better mom already. We also hope to tour the NICU if we have time.

Now, it's time for some of Max's favorites. I want to remind everyone that we are so excited about Max and although this hasn't been the smoothest pregnancy, we aren't letting Max's heart issues take away from the joy of God's gift that is Max.

1. Dancing or karate - we haven't figured out exactly what he does all the time, but for those of you who know's probably dancing....or high-kicking.
2. Lady Gaga - Amy, Max and I went to the concert in Nashville and Max went nuts. Amy says it's the hardest she has ever felt him kick - we're hoping he grows out of the Gaga phase very soon.
3. Sunday morning church music - eats it up.
4. Big meals...which he has been getting more of since Amy passed her gestational diabetes test.

1. Annie (Amy's dog) - can't blame him here. Annie and I have had our own issues. Annie likes to snuggle up between Amy and this huge body pillow called a Snoogle that literally takes up the majority of the bed. When Annie gets a little too close for comfort, Max lets her know and kicks and punches her until she growls, gets up and goes to the end of the bed....I like this kid already.
2. Ultrasound wand thingy - Max does NOT like to cooperate for the ultrasound techs. When they start poking on him, he pokes them right back. I don't know if Max is really getting 8 out of 8 on all these BPP's or if the tech's are just passing him so they don't have to deal with him anymore.

Thanks again for all your continued prayers. Here are a few things we are asking for specific prayer:
1. Max's continued growth... 6+ pounds would be ideal at delivery.
2. A lift in Max's heart rate. It's been ranging from 59 to 73...we'd like it to stay north of the 50's.
3. That the steroids fight off the antibodies and limit any further damage to the heart.
4. Continued peace and strength for Amy and I.
5. For the physicians that are currently working on Max...that they will manage his care wisely.

Thanks again. We'll keep you posted...

Saturday, May 7, 2011

A Good Report from the Doctor on 5-6-11

Yesterday was a good day! We went to the doctor and had a BPP and Max did great! A biophysicial profile (BPP) is a test that is sometimes done in the third trimester of high risk pregnancies in order to tell the general health of the baby. It is done by an ultrasound tech; they look at the baby's heart rate, muscle tone, movement, breathing, and amount of amniotic fluid. You get points for every category you pass. If the baby passes, is is assumed that he is generally in good health. We will be having this test twice a week from here on out.

I was very nervous when we started the test because the regular ultrasound tech we are used to wasn't there. I told the new girl we needed some good news because we had more than our fair share of bad news last week. She was so sweet and made us feel so comfortable. She celebrated each point Max got with us and then offered to call the geneticist that will be reading our scans to come meet us. The geneticist explained that even though Max's heart rate is only about half of what it should be, it is still sufficiently perfusing all his major organs and that they will keep a close eye on that. That was very helpful and encouraging for us to hear.

The sweet ultrasound tech also was able to get some great views of Max's face and she printed them off for us in 3D. I cannot tell you how exciting that was! He is very handsome and seems to look a lot like Tyler. We can tell that he has hair and he definitely has Tyler's lips. I can't wait to kiss those sweet little lips! We also saw him yawn on the screen which was really cute and funny. All in all, it was a great appointment and we are so thankful for that. We have another BPP on Monday and we will let you know how it goes.

Wednesday, May 4, 2011

Max's Room

As Tyler said, we are new to this world of blogging. I have no idea about rules and etiquette, but we will give it a try anyway. I always said I would never have a blog because I would have nothing to say... Well now, all of a sudden, I have plenty to say and I'm really excited about getting the word out.

In the last week, we have been overwhelmed with phone calls and emails from friends and family that are praying for us and our sweet baby Max. I cannot tell you how much your support and encouraging comments have meant to us. Tyler and I definitely believe in the power of prayer as evidenced by the great sense of peace and strength we have felt as a direct result of your support and prayers. Thank you so much and we promise to keep you updated.

Here are a few photos of Max's room. His bedding arrived today and I had so much fun setting up his room!

Tuesday, May 3, 2011

Welcome to Max's Blog


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 appointment is Friday.