The Heart of Our Journey...

So for those of you have been praying for peace for us, it’s working.

Yesterday we had our appointment with P’s cardiac surgeon, Dr. Mendeloff at 1:30. When we got there they let us know Dr. M was running behind because he had an emergency surgery to go in to. This guy saves the lives of babies so that was just fine by us to wait. Someone else had a kiddo that needed him way more than we did right then. We were more than willing to patiently wait.

So we went ahead and had our meeting with the Child Life Specialist. Her name is Margarita and she is fabulous. We had a great time with her and she relieved a lot of our fears and really helped us understand a lot more about what will be going on. Pierson was just in love with the place. There were toy rooms, giant dots filled with color changing liquid when you step on them, color changing lights in the ceiling… pretty cool! The child life specialist took us in to the mock operating room. She showed Pierson the table and let him put the mask used for anesthesia on his puppy, Blue Amos. Blue Amos played a big part in our trip today. P gave Blue Amos some shots, put an IV in his arm, gave him medicine from a syringe, medicine from a cup, put a Band-Aid on, looked in his ears and checked his reflexes. Pierson has had a LOT of blood pressure checks lately and it showed as we were playing with all of the doctor’s instruments in the mock OR. He took Blue Amos’ blood pressure probably 10 times. He seems comfortable with it and it was actually pretty touching to see how tenderly he cared for Blue Amos. We choose to believe that the way he cared for Amos is reflective of how be feels he has been cared for. That’s really comforting. We will wait until the 3^rd of July to start talking about surgery. The day of the surgery on the way there we will explain the sequence of events that will be happening. We feel better about how to talk to him about this. He saw some pictures of the Coarctation of the Aorta on my computer yesterday and said "That’s a picture of my heart!" I think he’s starting to get it on a level a 3 year old can understand.

Pierson and Margarita caring for Blue Amos

When it was time for us to tour the Congenital Heart ICU we weren’t able to because the doors were locked. We learned the rooms in the ICU can be transformed in to full functioning operating rooms in emergency situations. So that surgery that Dr. Mendeloff was in that had him running behind was in progress right inside. Some sweet baby in that unit required surgery right then and there to save their life. It broke our hearts. Thank God that a place like this exists! After our appointment with Dr. Mendeloff we got to go back and tour the CHICU. So many CHDs are caught right after babies are born and this place was just filled with them. Tiny babies, some with IVs in their heads. It was heartbreaking. We are thankful that we have had a good solid healthy 3 years with Pierson.

Dr. Mendeloff was fantastic! He did a great job explaining exactly what would go on during the surgery. He was able to make this whole operating on our baby’s heart thing sound a lot less scary. Having facts from his mouth, statistics on the risks and success rates – it was just… good. Dr. Mendeloff also said that this should be the only heart surgery P will ever need. There is a risk of scar tissue forming where they resection the aorta that may cause additional narrowing as he grows but that it could be fixed with an angioplasty. Please join with us in praying that no scar tissue ever forms. Pray that it heals immaculately and lasts for the rest of his very very very long life. He said P would probably be on blood pressure medicine for a while; we can totally deal with that. He will also be under the close watch of our cardiologist for a few months and then for the rest of his life. Dr. Mendeloff said that Pierson should be able to live a completely normal life after his aorta is repaired. Jeff asked if Pierson would have any restrictions on his activity and if he would be able to play sports. Dr. Mendeloff said he should be just fine to play sports. We realize playing sports isn’t the be-all end-all distinction for a person but I think every father of a boy has dreams of watching their son score the winning touch down or hit a home run. This is not a possibility for so many kids with congenital heart defects (CHD) but for Pierson it should be. We praise God for this. We are thankful for this.

Dr. Mendeloff said that this was a great catch on our pediatrician’s part. Have we mentioned lately that Dr. Amy Adams is our hero? Quite possibly world’s best pediatrician. P has a fairly significant narrowing of his aorta and it would keep getting narrower until it cut off blood flow completely, caused a stroke, caused heart failure or killed our baby. When our cardiologist was telling us we needed surgery last week he said "You can wait a week or two, but I wouldn’t wait more than a month." We were running out of time folks. Racing against a clock we didn’t even know existed. We were about to put Pierson in soccer in August. By August he would have been in serious trouble. We praise God that this was caught this before we had a tragedy on the soccer field… or at WinKids… or anywhere.

Our surgeon’s office encouraged us to get involved in a support group for families who have a child with a CHD. Through the support group we actually met a family that lives just minutes away who has a little baby who has had the same surgery P is having. We’re going to try to get together them soon. As it turns out, we live just minutes apart. Small world. Statistically though, it’s just about right. 1 in 100 kids has a CHD. I also realize the irony that I’ve lead a support group (for Alzheimer’s disease) for the last 4.5 years and now I’m on the receiving end of it.

We were at the hospital for a total of 5 hours yesterday but we learned so much and it brought us so much peace. God is so good to us. Oh! Speaking of God being good and providing for us -- while we were at our appointment yesterday I got a message from our friend Holly letting us know she had cooked dinner for us and would bring it over when we got home. What a relief! We were starved and I had nothing for dinner planned at all. We demolished it! While Pierson was eating it he said "I’m getting stronger! This food is making me so strong!"

Before we got out of the car at the hospital Jeff and I shared a peck. I looked at him and said, "Ten and a half years ago when we were on our first date did you ever dream we would be here?" He said no. You never know what’s around the corner. It is so comforting knowing that God knew about Pierson’s heart before there was time. He is Holy and sovereign and the giver of peace. We praise Him! We still have a long road to go and we covet your prayers! There is joy that our hearts can be still and rest in God’s loving arms. Beautiful rest.

This has been a good weekend. You can't go to doctor's offices or have appointments or work over the weekend so it gave us a chance to cool our jets. Our jets soooo needed some cooling. Our heavy hearts needed a break.
Saturday we got to do something we've been waiting to do for months. Months I tell you! Cars 2 came out which meant we got to take Pierson to his first movie. He was pretty excited about it and really enjoyed it. We really enjoyed it too. I kept looking over at him thinking how great it was to see him so happy and care free -- especially knowing what is just days ahead of us. This was something we have been looking forward to for so long. We had a lot planned this summer. Some things will still get to happen, some may not. We'll just have to see. But for that very moment everything was perfect and P was just another 3 year old boy Cars fanatic who was in Lightening McQueen and Tow Mater heaven.
 ¹⁷But Jesus defended himself. "My Father is working straight through, even on the Sabbath. So am I."
God gave us an opportunity to rest this weekend, yet God has not stopped working to care for and heal our little boy. He's hearing the sweet chorus of His people lifting Pierson and his heart up to our Father. God is working even as I write this. How great it our God? Our weary human minds and hearts needed a little rest this weekend. What incredible reassurance. We have to sleep... God's still working. We have to live life and prepare for this surgery and hospitalization... all the while God's still working. We're exhausted, God's still going strong. How perfect that we can rest because He never does.
The rest of our day was spent eating lunch with friends and swimming over at my parents. Restful. Perfect. A gift from our Father.
Tomorrow will not be filled with rest. I will be preparing to take my family medical leave from work  -- I have so much to do. It's not like when I went on maternity leave and had 9 months to plan and get my accounts ready. This is Jeff's busiest season at work so he's trying to get as much done as possible as well.
Aside from work, and where we need some serious prayers is for our appointment with our surgeon tomorrow. It's a 3 hour appointment. I can only imagine what all we will be going over. We have so many questions about P's surgery. Jeff watched a portion of the surgery on YouTube - I can't bring myself to do the same. After our surgery appointment is our appointment with the Child Life Specialists. We're very interested to see how they will tell him what's going on. We'll be paying close attention to how he reacts and feels. We're sure there will be homework for us to do too. We're all for it. Whatever helps P understand and not be scared is exactly what we want.
In my wildest dreams, I never imagined we would be here. Children's hospitals were for other people's poor sick kids, not ours. Yet now here we are. It's sad, and it's not where we planned on being - but it is where we are. But He has told us, He's still working. We believe this. What a blessing to have a Father who loves us without ceasing and works without ceasing. Thank you Lord.

You know how when you have a new baby and that baby sleeps through the night for the first time and you wake up in a complete panic thinking "Oh no! Something’s wrong with my baby!" That’s how I woke up this morning. Pierson slept in our bed last night. In that state of woken from dead sleep panic I looked at him snoozing away and in a moment of reflection realized – Oh no. There is something wrong with my baby… and we have to have surgery to fix it. So I cried. That was at 4am. I’ve been up ever since.

Today has been a rollercoaster. We both cried this morning, of course. As much as we would have loved to stay home and weep and mope all day, that wasn’t an option – life had to go on. We had jobs to get to and work to be done. I was so afraid I was going to walk in to one of my accounts and just burst in to tears. I managed not to do this, although I got close… especially when talking to mommies of kids P’s age. At one of my accounts the girl at the front desk went on and on and on about how her kid has a tummy bug and was up all night pooping. I felt like looking right at her and screaming "MY BABY HAS A HEART DEFECT, AND WE HAVE TO HAVE SURGERY OR HE WON’T LIVE AND I’M REALLY UPSET AND SCARED AND WORRIED AND WOULD KILL FOR HIM TO JUST HAVE THE RUNS SO GET OVER IT LADY!" – I refrained. I put on my empathetic face and nodded my head. Whew. That was a lot of work. A

When I got to my office I was greeted by hugs and tears. We’re all moms there, and most of my co-workers are also nurses so they could appreciate what I was going through on more than one level. What a joy, what an extreme blessing to work for a company that has surrounded our sweet little family in prayer and support. I don’t know many bosses that come up to you and say "Take off as much time as you need, focus on your son. We love you and are praying for you." I did cry at the office. One of my coworkers gave me a hug and said "You are such a strong woman." I replied back with "Well, I don’t know about that." Actually, I do know about that. I’m not strong at all. That’s a fact. Every song that played on KLTY today was about having God be your strength. The good news is that Jeff and I don’t have to be strong. We can be mooshy lumps and puddles of tears, those are emotions God made us with. God provides by being strong for us… so we don’t have to be. I feel like He helped me take every step I took today…. He is our strength. The Lord God is our strength. We’re messes, HE is strong. He has provided for us by carrying us. We know He will continue to do so.

I made a lot of phone calls today. We cancelled his swim and gymnastics classes. WinKids was precious enough to give us full refund for this quarter even though we’ve already attended classes. The lady on the phone started crying and then I joined in. It’s comforting to know I’m not crying alone.

One of the things we have struggled with is: How do we tell Pierson he’s having surgery and will be in the hospital for a while?

Thankfully the Children’s hospital we are having his surgery at has a department of Child Life Specialists (CLS) and has a CLS that specializes in Congenital Heart Defects. I got to speak with the CLS today for nearly an hour. She answered SO many questions for us. They have great ways to prepare P for surgery. There is a mock OR for him to explore where he can see the machines and operating table and have an opportunity to touch and feel and see this room. The CLS will then talk and walk him through in terms he can understand (sounds very play therapy based) about what surgery is and what tubes will be on him when he wakes up and how not to be afraid or touch them. I hate that we have to have a CLS but am SO thankful that we have this resource. Yet another way God has provided for us.

I also spoke with the surgeon’s office again. We were so in shock and disoriented by the time we got to his office yesterday we didn’t remember half of what they told us. They gave us a packet of information but I couldn’t bear to open it until this afternoon. It was just too real. But I did open it, and I talked to the surgeon’s office for a really long time. They answered all kinds of questions for me – and told us a lot of things they told us yesterday that we didn’t recall at all. I think sometimes your heart can be so burdened and your brain so overwhelmed that you become temporarily deaf. We experienced this phenomenon first hand yesterday.

I also called Dr. Laird’s office to ask a few questions. I was expecting to speak with a nurse, but I was told Dr. Laird made all phone calls to his patient’s parents himself. I was more than happy to wait for that phone call back. What an extremely nice and knowledgeable man! He gave us the ok for P to swim in the pool leading up to his surgery. P will love this.

We also just got a phone call from our pediatrician Dr. Adams. What a blessing to have your pediatrician say she will be praying for us and know that it’s truth. I thanked her profusely for being so thorough and taking the high blood pressure seriously. Truly, she has saved his life.

We have truly been blessed with a team of wonderful medical professionals. It calms this mommy’s heart to know P’s heart is in good hands -- Quite literally in someone else’s hands. That's scary to say. Truth be told, it’s really in the Lord’s though. Yes, that is truth. That's not so scary to say.

We have been so blessed with so many people’s kind words and prayers. It is incredibly humbling to know that people are interceding to our Amazing Father, Jehovah Rapha, for Pierson and for us. We truly feel every prayer lifted to the Lord. Please, we beg of you, keep them coming!!!! We still have a long road to go.

I think we’ve felt every emotion you could feel today. Sadness/crying, disbelief, grief, gratitude, joy, denial, overwhelming emotion, encouraged, empowered, powerless, alone, surrounded, provided for, happiness, LOVE… the list goes on.

Please keep those prayers coming! Someday when I Pierson is older maybe he can read this blog… read the comments and the sweet notes of people who are lifting him up to our Father. We are thankful for intercession. We are also so thankful for all of the encouraging words you all are saying. You have no idea how precious they are to us. We have truly felt your prayers – felt them. God is listening.

Our God is BIG. He is our strength and he holds our sweet little boy in His mighty hands. He hears each desperate plea. He mends our broken hearts.

Our family at an impromptu Rangers game earlier this month. He really did have a good time!

             Pierson's 3rd birthday. Just 5 days before his initial high blood pressure reading.

A few friends have encouraged me to start this blog to help keep people informed about what's going on in our lives right now --- because it's a lot.

It all started a week and a half ago at Pierson's 3 year old well-check. When the nurse took us back to the exam room and took his blood pressure it was 151/91. I knew that was too high for an adult and was fairly certain that was way not ok for a kiddo. She took the blood pressure 3 more times, brought in an electronic monitor, whole gamete… same results.

When Dr. Adams came in she checked P out. When she got to his ears she discovered he did have an ear infection in one ear. She said the high blood pressure could be due to the infection but wasn’t sold on it so she wanted us to come back in a week when he was done with his antibiotics.
So yesterday we went back in. In my head I decided that everything in fact was going to be a-ok. We were going to take his blood pressure and it would be a perfect 90/50, just like it had been in the past. It wasn’t. Still too high. In my head I thought "What gives?" The nurse took it again. Still too high. Ok, really, what’s going on? She said she would go get Dr. Adams and be back in a minute. The nurse came back in to the room a few minutes later and said "Let me try one more thing" --- She took P’s blood pressure in his other arm. Same reading. Ok, now I’m getting concerned.

We sat in the exam room for not very long at all and read some books then Dr. Adams came in. She said she was baffled. She had never seen a perfectly healthy, active 3 year old have high blood pressure and no other symptoms. She had called a cardiologist and was waiting to hear back from him. She started talking about what our action plan would be. We would be seeing a specialist, or two – cardiology (heart) and nephrology (kidney). Just as I started internalizing all of this Dr. Adam’s assistant came in the room and said the cardiologist was on the phone waiting to speak with her. She was gone a few minutes then came back in. She and the cardiologist had a talk and he wanted to see Pierson the next day. Why was I expecting it to be longer than that? The next day was soon… like, tomorrow. We set the appointment for 10:45 this morning.

So off to the cardiologist we went. Mommies, do you know what I mean when I say that I knew in my heart something was wrong? We prayed this was a fluke, but in my heart I really felt like we would not be leaving with good news… but I could hope against my gut feeling, right?

Pierson was absolutely perfect at the cardiologist’s office. We started off with an EKG and he lay still and made zero fuss about the electrodes. Do we have a great kid or what? Then we went in to the exam room and met with Dr. Laird. All around his office was scripture decorating the walls. You couldn’t look anywhere and not be face to face with God’s truth. He took P’s blood pressure, again. Still too high. He listened to Pierson’s heart and did a full exam. Pierson made no fuss whatsoever. Then it was time for the electrocardiogram (a sonogram of the heart). They put on a movie to watch while he was on the table. It was "Finding Nemo", a perennial favorite at our house. There he lay holding my hand perfectly still for an entire hour. I kept a close look at the sonographer to see if I could read anything from her face since I had no idea what was going on on that screen. All of a sudden I saw the shape of her lips change and she started pressing buttons on the machine. Right then I knew she had found something. She left the room then came back and told us she wanted to take some more pictures. She was focusing on one spot at the top of P’s chest for a really really really long time. She left the room again to go get the doctor. I turned around to Jeff. "She found something. Something’s wrong."

When the doctor returned he had a med student with him (never a good sign… why would they want to see a normal 3 year old?) He took some more pictures of Pierson (still focusing on that same spot). The doctor, the med student and the sonographer were all looking at this hard. Yeah, something’s defiantly wrong.
We went back to the exam room and the doctor joined us. What happened next still blows our minds. He told us that there was in fact something wrong with P’s heart. He showed us a diagram and told us what Coarctation of the Aorta is, because that’s what Pierson has. We just sat there stunned. I’m looking at Jeff and see his pre-cry face forming. I made the decision right then to show no emotion and really put on my listening ears. Listening ears or not, surreal was what it actually was. Next thing we knew we were in the surgeon’s office scheduling surgery. The surgery staff was sweet and optimistic. They assured us he would be up and going basically as soon as they remove his chest tube post-op.

Pierson has been diagnosed with Coarctation of the Aorta. He was born with this - it's basically like a kink in a hose (hose being his aorta) P has a fairly significant narrowing of his aorta. Apparently the most common way this is found is hypertension (high blood pressure) around age 3. No symptoms are present before then. Praise God for a pediatrician who took this seriously.

What this means in we are now scheduled for surgery (have a I mentioned our heads are spinning) July 6. He has pre-op and CT scan on July 5. Our surgery will be in Dallas. Pierson will spend the first 24-48 hours in ICU in a special unit just for kids with congenital heart defects (who knew there was such a thing) and then a few days in the general part of the hospital. We've heard 3-7 days in the hospital. The surgery will be taking away the unhealthy part (the kink) of the aorta and stretching the healthy parts together as one. They're hoping to go through a thoracic opening in his back rather than through his chest. The out comes for these surgeries are usually fantastic. 1 in 150 children are born with Coarctation of the Aorta. That’s a lot of kids. Why is this not more well known?

So, Jeff and I have cried, a lot. We’ve told our family what’s going on, all the while having the words coming out of our mouth and still not fully digesting them. It’s weird, because yesterday he was healthy as a horse and today he has a heart defect that requires surgery. My baby is having heart surgery. That doesn’t seem real. It isn’t real, right? No, it is. It stinks.

If it wasn’t heart related our next stop was a nephrologists. Kidney problems are often times fatal. So we’re happy with heart. Right? Yes, glad it’s not kidney. It is heart though. Praise YOU LORD that it’s not kidney.
Then my brain goes back to… it’s a birth defect, so it must be something I did wrong during pregnancy. No Jane, that’ s Satan whispering in your ear. He’s a liar and we know this. Our mighty GOD silences him. Pierson, heart defect and all was made by the same hands that formed the mountains and the seas. He tells each of us that in Psalm 139

Oh yes, you shaped me first inside, then out; you formed me in my mother's womb. I thank you, High God "you're breathtaking! Body and soul, I am marvelously made! I worship in adoration what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I'd even lived one day. Your thoughts how rare, how beautiful!

We are going to have a lot more thoughts, feelings and questions over the next few days. We’re going to try to post things here so we can keep everyone abreast.

Everyone has asked what they can do… we have no idea! We’re not even quite sure what our needs are, mostly because we had none this morning.
Please join us in praying for our sweet precious gift from God. Pray God heals him completely! No side effects, quick, perfect and permanent healing. Prayers for Jeff and I would be great too if you wouldn’t mind throwing those in the mix. You very well may see us crying over the next few weeks. Please bear with us. More than that, please pray with us.