Filled with Gratitude

Going into our pre-surgery "exile" time, I am feeling so thankful. I am thankful that both kids were healthy last week and got to have a great last week out and about. We spent time with Jake's friends, Addison, Emery, and Harper at the Children's Museum and had a great time there. We spent time with his friend Jackson, and he had a sleepover at Jackson's house. He had fun at school, speech, BSF, and Bible class.

I am so thankful for the teachers in Jake's life who are making this time away from school so much easier. His pre-school teachers at WoodsEdge sent home all of the work he'll miss over the next 7 weeks so we can work on it during our "Mommy Pre-school" time. His sweet speech therapist Britanie sent home exercises for me to do with him as well to keep up the progress he's been making in therapy. His BSF teachers are praying for him, and my friend Claudia can get me my make-up BSF homework so I can keep up with that. I help teach Jake's Bible class at church, and my co-teacher Diane even sent Jake home several presents he can open up while we're home to give him new things to play with periodically. He's richly blessed with the teachers in his life!

I'm thankful for incredible friends and family. My sister-in-law Destin (who I truly think of as a sister) made prayer bracelets for Jake so people would have a reminder to be praying for him. She mailed them to several people and handed them out to her friends. She mailed several to my parents that they handed out in Oklahoma, and then sent my friend Claudia a bunch that she handed out at church. Jake got one, too, and loves it. He will not take it off and will tell you it is for "prayers for his heart and for his doctor."

My friends Claudia and Becky put together a heart walk team this year for the It's My Heart walk we did last year. Becky's little girl also has a CHD and so her daughter Kate and Jake and another little girl from church, Alanna will be on a team together. The walk is right before Jake's surgery so we won't be able to go, but he'll be being walked for anyway. I'm so excited they're still doing this! Their team is called "It's Their Heart," and Becky is making t-shirts with the three kids names on them which read: It's Their Heart, but they've stolen ours! So cute.

Our life group is such a support as well! I'm grateful for the Mathews' and the Wesley's and their constant love and support.

Saturday we had another huge blessing. One of my very best friends and college roommates, Randi, has a friend who is a photographer in Conroe. Randi called a few weeks ago to say that she wanted to give us family pictures from her friend as a pre-surgery gift. I was totally overwhelmed! I had been wanting to do a family picture before surgery but wasn't sure if that was going to happen. We had a great time taking the pictures on Saturday and I'll post more about this later this week with some of the proofs.

So, we are going into this three week period before surgery with grateful hearts. I'm excited teaching Jake and Grace at home and having "Mommy Pre-school." I'll be posting more about our activities and adventures as well.

Some recent pictures:

Meeting with the Surgeon

**I added a place at the top left corner of our blog where you can subscribe to our blog by email so you will get an email when we update it. We'll try to put all info. pertaining to Jake's surgery on the blog so it will be an easy way for people to follow the blog if interested.

Yesterday we had our surgery consult with Dr. Heinle and his and PA at TCH. We have had so many people let us know they were praying specifically for us yesterday and we could feel the cover of prayer. We had a peace going into the meeting and definitely after we left the meeting.

We were there about four hours and spent most of that time with Mary, the PA. She is such a precious person and has known Jake since he was a baby during his first surgery. She's always been Jake's favorite person at TCH and that definitely hasn't changed. She answered many basic questions for us and got us "prepped" for our meeting with Dr. Heinle. She gave us more questions to ask and filled us in on details we needed to know.

Dr. Heinle then came in and we talked to him for a good hour. In a very strange way, seeing he and Mary was like seeing old friends. I think it's because they truly understand Jake's heart and really do know it better than anyone else. We're also much more relaxed with him now since this is Jake's third surgery. Here's the gist of our conversation:

• They are baffled with the way this membrane has returned. The development of these membranes is uncommon (maybe in 5%-10% of AV canal defects) and the fact that it's come back is also rare (maybe 10% after a septal myectomy). The strange thing is the pace of Jake's membrane growth....Jake's is growing much faster than other cases they have. They felt the last surgery was very successful and were convinced that the membrane would not grow back or would grow very slowly. Jake's grew at a rapid rate and really got worse this fall. They don't know why or what is causing this. Because of this, they spent a good deal of time at their surgery meeting last week discussing Jake. Dr. Heinle expressed a bit of frustration because things looked so well just before closing Jake up last time.
  

• Dr. Heinle strongly feels that Jake does not need a valve replacement yet. This is where there was disagreement among the other surgeons, but he, as well as Dr. Steltzer (see yesterday's post) do not think Jake is big enough/old enough to merit valve replacement yet. If Jake's aortic valve was replaced it would ensure multiple surgeries in his future.

• He will perform the same surgery as last time again and attempt to cut enough of the membrane out so that it doesn't grow back. He will be more aggressive this time and will also cut into more of the heart muscle (the septal wall tissue) itself so that the path to and into the aorta is as straight as can be (this is called the left ventricle outflow tract- LVOT).

• The membrane grows at the base of the aortic valve and extends around to the lower base of the mitral valve. It's not known how much of the membrane may be on the underside of the aortic leaflet and this will only be found out for sure during surgery. Even if the membrane is located on the aortic leaflet it's hopeful that Dr. Heinle will be able peel off the leaflet without making the leaflet too thin. There's always the risk of damaging the valve when doing this or it may not be able to be repaired so we do have to be ready for a valve replacement just in case (Jake's too young for a mechanical valve). Mechanical valves do last longer but we don't necessarily want to start on lifelong blood thinners just yet. It's really like trying to operate on a very small piece of tissue paper. It's weird to think that right now Jake's potential human donor valve is in a refrigerator at Texas Children's and will be on standby during the surgery.
  

• There is also a greater risk of a pacemaker this time since he will do a more aggressive resection. This wouldn't be in the end of the world, but we would prefer for Jake not to have one. He would have it his whole life.

• His EKG results (the Holter monitor test) were good!

• I told them the ENT wants Jake to have tubes in his ears. They will not allow those to be put in during heart surgery, but think it's a wonderful idea to prevent ear infections in the future, thus making Jake healthier, all better for his heart. They would rather him wait until April to have them put in and do the heart surgery first. If Jake happens to get an ear infection in the next month before surgery, they would put tubes in and move back his heart surgery. Please pray he stays healthy!!! We don't want a postponement.

Many people have asked us if this next surgery will "fix" Jake or be his last one. There is not a cure for CHD; it is a lifetime journey. Jake was born with a simple CHD, a hole in his heart. When that was patched, the surgeons fully expected him to live 20-30 years before ever needing another repair. They expected him to possible need a new Mitral valve as an adult. Then, he developed the sub-aortic stenosis, another seemingly "easy" CHD. For some reason, Jake has a very stubborn case, and one that they just don't understand. It will be a lifelong journey because it won't ever just go away; he will always be under the care of a cardiologist. Our fervent prayer is that after this next surgery, the obstruction will stop growing or DRAMATICALLY slow down. We'll just have to pray harder about this. Whatever happens, the longer we have the better as it opens up a couple of other options for procedures that have had good success rates or if he's older it may be good to go with a mechanical valve.

We feel very confident after yesterday's meeting. We have the utmost confidence in Dr. Heinle and his staff; they are the best at what they do and will do another phenomenal job operating on Jake. We wish to goodness that there was a surgery that would be a magic fix so that Jake could be "normal" and get to play soccer with his friends and bounce in all the bounce houses his heart desires. However, we are thankful that they are doing what is best for Jake right now and that we have a surgeon who is willing to be cautiously aggressive. Many surgeons might be tempted to rush in and replace the valve which would more than likely get rid of the membrane growth but create a whole new set of challenges.

Once again, we just want to say thank you for all of the prayers. We are humbled and overwhelmed to say the least. Please continue to pray for the surgeons, for Jake's good health leading up to surgery, for Jake's emotional well being during surgery and after, for Ty and I's ability to care for Jake, and for Grace as she will have stay in with Jake before and after surgery and will have to be away from us during the week of surgery quite a bit. Thank you!

Our God is SO Big!

I was absolutely overwhelmed today by just how big God is. Ty and I were able to ask Dr. Steltzer, one of the top cardiac surgeons in the country a few questions today about Jake's upcoming surgery. This surgeon helped develop the Ross procedure, one of the options for Jake, and has performed more Ross operations than any other surgeon and is the leading expert on it today. He operates in New York City, but we have several connections with him, and he was kind enough to answer Ty's email within a few hours today even though he was on vacation.

Thinking back on how we formed this connection is absolutely amazing to me and showed me today how God began taking care of Jake long before we knew Jake. I have to share this chain of events and this story:

Let's go back to 1995 and my freshman year at Harding University. One October afternoon, my friend informed me that her boyfriend's friend needed a last minute date to a "function" (Harding's version of fraternity/sorority socials). She said a guy named Brian Hannel would be picking me up in his Black Eagle Talon in front of my dorm. Brian took me to the Knights' function that night, and consequently, he became of one my best friends in college. That spring his best friend Travis and he had decided to go on the Spring Break campaign to New York City, and they convinced Sallie (my best friend) and I to go as well. We had such a fun, memorable week as we volunteered with a boy's home and a homeless shelter, but also got to explore the city. We even got to be on the Today show (Well, actually, just Brian and Sallie did…they jumped in front of Travis and I when the cameras panned in and you could just see our hands frantically waving over Sal and Brian's heads). Anyway, we all stayed with members from the Manhattan Church of Christ, and Sallie and I got to stay in a penthouse apartment with a surgeon and his family. The rest of our friends had to stay in much smaller places and joked that we were staying with "Daddy Warbucks."

Fast forward five years, and Sallie actually moved to NYC to be a nanny and then a teacher and attended the Manhattan Church of Christ. As she got to know more people at church, she realized that one family, the Steltzer's, was the one we had stayed with that week in college. It turns out he is an elder at the church, and he and his family became good friends with Sallie.

Back in Houston, Ty and I got married, and our best "couple" friends with whom we co-led a life-group with were the Hance's. As we got to know them, we realized that Robert's uncle is none other than Dr. Steltzer.

8 years later, Jake needs his third heart surgery and may possibly receive the Ross procedure. Who is the nation's leading expert on this very surgery? The very cardiac surgeon who we "inadvertently" have had so many connections with over the past 15 years.

God intricately weaves our lives together, and many times we don't realize his plans until years later. I was overwhelmed today as this sunk in, and I thought back how this particular chain of events occurred. God was taking care of Jake long before I had considered having children.

Today, through the kindness of Dr. Steltzer (and my dear friend Sallie for telling him that we had questions), we have more knowledge and confidence as we go into tomorrow's appointment with Jake's surgeon. He answered many questions we had about the Ross procedure and what would be best for Jake. He also gave us questions to ask tomorrow to be better prepared (Although, if you could see the questions Ty already has, you would think we were already plenty prepared…). We had a consult with one of the nation's best cardiac surgeons and to think it all started back at a Harding social function.

God is big!

Update--surgery scheduled

Just a quick note that we're meeting with Dr. Heinle, Jake's surgeon, on Wednesday afternoon. The surgery has been scheduled for February 22nd. The nurse said it may be moved later that week but wouldn't be moved later than that. Interestingly, Jake's first surgery was on my birthday, his second surgery was a day after my dad's birthday and Ty and I's anniversary, and this surgery will be the week of Grace's birthday (the 24th). I guess this just makes sure we can remember the dates :) It's a good thing Grace will just be turning two so she won't feel so neglected. Jake's birthday is Feb. 1st and I was going to do a joint party for them in the middle of the month, but that might get moved to March or maybe will just do small celebrations this year. I think as long as both of them get cupcakes and balloons, they'll be happy :) We'll update on Wednesday with details from our meeting.

…continued saga

So, Jake can't seem to catch a break. Monday I took him to his pediatrician for a follow-up from his Christmas sinus infection/ear infection. His ears have always been incredibly waxy and rather impossible to see in, so she referred us to an ENT. He had four sinus/ear infections this fall, and she wanted us to get that taken care of before heart surgery time.

Monday night Jake started running fever…The past three days it's been around 102 without Tylenol/Motrin. Tuesday I called the doctor back, and they felt like it was the recurring sinus/ear infection and got us into the ENT today. The doctor didn't simply want to put him on another antibiotic (which I appreciated).

Today, we saw the ENT. He spent 20 minutes vacuuming out Jake's ears. Poor little guy had a temp of 102.5 while this was happening. He determined there was no infection but fluid around the ears from previous infections. He suggested we get the flu test. He also thinks Jake needs tubes to prevent the recurring infections. I loved this doctor, but he said he couldn't put them in because there was no way Jake's cardiologist would agreed to him having surgery in the Woodlands so he referred us to an ENT at TCH. He said they could do it while we were at the hospital for heart surgery maybe.

Jake is now screaming and burning up (Grace starts crying b/c Jake is)…I just drove back to our pediatrician's office and begged for a flu test and a strep test. They felt sorry for me and I got in with another doctor there (ours was out) and sure enough…he has the flu. Apparently, he has type B flu which they had not yet seen in their office yet this season. Leave it to Jake to be the first.

Now I feel pretty awful. I never got his flu shot this year. Everytime I tried, he was sick with a sinus infection and we couldn't do it. I gave up and didn't get it done. Not winning any Mother of the Year awards for that decision.

Hopefully, after another day or so, the flu will run its course.

**Also, I did talk to the cardiologist today. The surgeon's office should call me within 7 days. At the consult with the surgeons, they were in disagreement about whether to replace Jake's valve or to just take the membrane. We'll discuss all of the pros and cons when we meet with the surgeon.

So, that's been our week so far. We want to pray that Jake gets over this quickly and for Grace not to get sick. We also want to pray for the wisdom of the surgeons reviewing Jake's case and for wisdom for Ty and I when we meet with them.

I don't want our blog to become one sad medical story after another, but I guess right now I need to humble myself and let people know how to pray for Jake and us. I've already been overwhelmed by the calls and messages from so many. It's humbling to say the least but such a comfort to know Jake is being lifted up to God so much. He was scared of monsters in his room earlier this week one night, and I told him God was watching over him, and he had no idea how many people were praying for him! Thank you for that!

and again...

Jake's every three month check-up with his cardiologist, Dr. Altman was today at TCH, and we found out it's time for heart surgery #3. Here's my version of our day:

We arrived at 8:30 and got his echo done first. We had the same technician we've had the past two times who likes Jake and who Jake likes, a pretty good match I would say. Jake lay perfectly still and as always watched the monitor instead of the cartoons to check-out his heart. After the echo, he got his three stickers and lollipop for being so still, and we headed into see the doctor. I knew he was acting strange when he didn't want the lollipop and refused to wear his stickers. The nurse's assistant took us back to take his vitals and got a blood pressure of 55/45. She took it two more times and the highest she could get was 64/45. Jake was being too still now and looked rather pale. Usually we have to wait at least 30 minutes to see the doctor, but she quickly popped in this time and was visibly alarmed. Within about 10 more minutes, he began perking up and his pressure was up to 75/65 and rising.

She told us that his blood pressure worried her and looking at the echo results confirmed that it's definitely time for another repair. Looking back on the past month or so, I can remember several times where it seems like Jake just checks out for a bit. He's been pale and has just wanted to sit and mindlessly watch TV. I didn't realize how low his blood pressure had been getting and am thankful it happened today where the doctor could witness it. Part of the cause is hereditary, but it can be dangerous when paired with aortic stenosis. She wants him to drink Gatorade everyday and increase his sodium through foods as well. I need to make sure his snack at school has plenty of sodium and make sure he drinking enough while there.

Then we discussed the echo results: the mean pressure at his aortic valve measured 41 mm HG with a peak at 75 mm HG. These numbers are similar to the numbers from last time which got him his last surgery. In the fall, the mean was at 31 mm HG so it's grown significantly in 3 months. Basically, the membrane beneath the aortic valve has grown and the blood flow is being restricted at a moderate/severe level. Last time, the membrane was peeled off the valve, but the surgeon did not take it all. The reason being that if he did more damage would be caused to the heart than was deemed necessary. He felt he took enough to prevent further growth. Unfortunately, that was not the case.

This time the surgeon will go in and try to take the entire membrane. In doing so, there is increased risk that the electrical system will be effected and that he will need a pacemaker. If the valve is also too damaged, he will have to replace the valve. We have a few options available when it comes to valve replacement that we can discuss with Dr. Heinle when we meet with him. Our hope is that the valve will not have to be replaced and that the coming surgery will be effective long term.

The other component today was a slightly irregular EKG reading. Jake was sent home with an EKG Holter monitor to wear for the next 24 hours so the doctor can get a more complete reading of his heart rhythm. If those results come back unfavorable, the surgery would be moved up sooner. As it is, she would like him to have surgery within the next two months or so. We now play the waiting game.

Dr. Altman will present Jake's case to the surgery team on Monday and will call us with their feedback. We then will have to wait for a surgical nurse to call us with his surgery date. The past two times have seemed to take an eternity so I'm trying to prepare myself again. We should know within 2-3 weeks.

So, here we are again. Our appointment today was overwhelming to say the least. Jake was awesome the whole time. He played his Buzz computer game while we talked with Dr. Altman and patiently waited for ordeal to be over so he could go see the trains and get his ice cream at McDonald's (our TCH tradition). Ty and I asked a million questions and are still digesting the answers. Dr. Altman is always so patient with us (me especially). I did great until we got home and Jake tried to go potty and got really upset when he realized he couldn't with his EKG holter in his pocket. Last time he wore one, he wasn't potty trained so I hadn't thought of this. I just held the wires for him so they would stay dry while he went each time. He really started crying and then so did I.

I HATE for my baby to have to go through yet another surgery. I hope to goodness that he doesn't wake up so resentful of us putting him through this. He'll be four this time and will really understand. At 9 months and even 2, there wasn't much to explain. Now there is. He loves and is proud of his scar…I just wish I could spare him more pain. We ran into our surgeon's PA outside of the hospital today and she gave us big hugs. She told us they'd just remodeled and that she'd get us the big consult room with the big flatscreen. She's so warm and wonderful, but I hate that we'll have to see her and the surgery staff again. I hate that they already know us and Jake. I hate that by the age of four, he'll have had 3 open heart surgeries.

I am thankful though. I'm thankful we live in one of the very best medical communities in the world with literally the best pediatric heart surgeons in the world. I'm thankful for our vast group of family and friends that continue to lift us up in prayer. I'm thankful for our sweet Jake and his incredible sweet spirit and tough resolve that will get him through another major surgery. I'm thankful for God who will see us through this storm. I'm thankful that we've become part of the It's My Heart community who have all been through this before.

We just had Christmas and the kids have plenty of toys to see us through our upcoming hibernation period before and after surgery. I can just homeschool Jake the pre-school he misses and do some fun crafts with both he and Grace. I'm sure his speech therapist can give me exercises to practice his speech with him as well while we miss those appointments. I'm pretty sure this will only strengthen our family as we rely on each other more. I'm praying it will also strengthen our faith and relationship with God as well.

I'm sorry for the long diatribe, but writing is therapeutic and helps. We'll keep the blog updated with info. as we receive it.

Still Enjoying Christmas

The kids have definitely been enjoying their new Christmas toys! Here are a few pictures from the past week:

Gracie taking Jesse for a walk

Jake playing his drums from Santa…thank goodness Daddy purchased him some quieter drumsticks this week…they make all the difference!

Painting on their easel…the world's best gift because it's two sided and they can both paint at the same time without arguing :)

Grace's masterpiece…this is before she starting painting her face :)

And, my favorite of all…My friend Misty and I went on a mad dash for Halloween costumes the day after Halloween this year and found great deals. I got Jake a Darth Vader, Batman, and Superman for just $5 each and found Grace a Super Girl and princess dresses for $5 each as well. They love playing pretend so I made them a dress up trunk and we how have hours of fun!

I'm aware that Jake has his Darth mask on backwards, but you can't really argue with him…he's convinced this is how to wear it.

My Superman and Super Girl with Jo Jo today