Medical Records

Just read through 73 pages of Cooper's medical history encompassing his diagnosis in August, heart surgery in Oct. and his follow-ups. Needless to say, we have a lot to be thankful for this year. Great to read Dr. Gus's report and see "The aortic arch is widely patent (which mean unobstructed in this context - I looked it up) without evidence of residual coarctation."

The Bracelets Are In

We posted a few weeks ago about the bracelets we had made for Dr. Gus' charities - WVU Children's Hospital, the Ronald McDonald House and Camp Mountain Hope.

We've had them for about a week now, but we felt with the devestation Hurricane Sandy caused last week, that wasn't an appropriate time to ask people to support us.

So the bracelets are in. They are $3 each or 2 for $5. If you are in the Waynesburg area, shoot me a message and we can meet up. If you are in Steubenville, my mom has some. If you are in NOVA, Pam's sister Sandy has some. If none of those options work for you, send me an email with how many you need and your address and you can either send me a check or pay via PayPal.

Thanks in advance for your support.

Three Weeks Later

It's hard to believe that it's been three weeks since Coop's surgery. Thanks for all the prayers for both him and us.

We didn't post any pictures of his incision. But here is his scar. It goes from just left of his spine to under his arm.

Giving Back

Today is Friday, Oct. 19. Cooper's surgery was Monday, October 8 and if you've followed along, the surgery went well and his recovery has been remarkable.

As I write this, I am still wearing my "parent" hospital bracelet. I've had quite a few people ask me if Coop is still in the hospital or why I am wearing the bracelet.

My answer is really, really simple. I wear it as a reminder of how lucky and grateful I am as well as a reminder to be thankful and prayerful more often.

I relied on my faith in God throughout our ordeal - Pam and I didn't shy away from making that known. But in reflection since surgery, I became even more thankful to God as I realized that my relationship with Him isn't even a fraction of what I thought it was.

My morning routine is pretty repetitive. Within the first 10 minutes of waking up (within the first minute if Pam is already up with Coop), I am on my iPhone checking my email accounts, Facebook, fantasy football teams and the weather. The first time I get in the car by myself on a road without a lot of stop and go traffic, I turn off the radio and have an audible conversation with God. It usually lasts about 10 minutes.

But that was it. God got 10 minutes of my day (Of course once Coop’s condition was known, God received a little more time throughout the day).

I listen to K-Love radio about 80 percent of the time in the car, and while some may say it's better than alternatives and it does make me feel better, it really isn't spending time with God.

Our family has been through a lot and the hospital bracelet has reminded me to be more prayerful and work on building a better relationship with God.

With the strength, calmness and peace of mind we experienced surgery day, it was evident that everyone's prayers worked. And one of the verses that kept appearing was:

Pray without ceasing - 1 Thessalonians 5:17

DR. GUS

We are also thankful for Dr. Gus. We are indebted to Dr. Gus for, in essence, saving Cooper's life. But how do you repay someone who has done that for you?

Since the night of surgery, Pam and I have been asking around trying to figure out what we could do to show Dr. Gus our appreciation. We were told by the nurses, cardiologists and the attending doctor that Dr. Gus loves WVU, golf, traveling and his grandchildren.

I had another idea. In our research of Dr. Gus, we knew he had a brother who was a veterinarian in his hometown. Why not call his brother to see if he had any ideas?

Pam called the veterinarian’s office Monday and asked for ideas. We were told that a gift was unnecessary. But if we were going to be persistent, Dr. Gus had three organizations close to his heart - WVU Children's Hospital, the Ronald McDonald House at the Children's Hospital and Camp Mountain Heart, a summer camp for kids with congenital heart diseases, cardiomyopathy and arrhythmias.

I'm involved in a non-profit, so I know every little bit counts, but how much could a $250 gift really help?

WHERE GOD AND DR. GUS COME TOGETHER

I mentioned in an earlier post before surgery about my dreams, so I find it a little ironic that I had this idea in a dream (there is also a follow up in another dream, but I'll get to that in a minute).

We felt our $250 gift wouldn't amount to much. But what if we could use it in a way that could raise more money?

On Wednesday night, Pam ordered 1,000 silicone bracelets that say "Pray Without Ceasing + 1 Thessalonians 5:17" (the + is actually a cross on the band). They are red - the color of the American Heart Association and the awareness color of congenital heart disease - with white lettering.

Our thought is to sell them for $3 each or 2 for $5 with the proceeds being donated in Dr. Gus's name to his three beloved charities.

We believe that the bracelets will not only be a reminder that we are called to continuously build and strengthen our relationship with God and Jesus, but they will also help kids and families.
 
HOW CAN YOU HELP?

The obvious answer is to buy a couple.
 
A better solution is to let your network know about them – families, friends, church groups, social media connections, neighbors, co-workers.

They don't say anything about Cooper, so people don't have to feel weird about wearing a bracelet referencing someone they don't know.
 
After ordering them Wednesday night, I had another dream that said we would sell at least 10,000 bracelets. How awesome would it be to raise $20,000+ for these three charities?
 
It’s a tall order, but with God, all things are possible.
 
If you’d like to help out, please let us know. If you think you could sell 10 or 20 or 50, we'd appreciate your hard work.

Feel free to comment through this blog, the Coop Troop Facebook page, mine or Pam’s personal Facebook page or email me at perrycunningham @ yahoo . com (Sorry for the confusion. I did that so my email address couldn’t be easily harvested by automatic programs that comb internet content to create spam lists).

I hope to have a unique Facebook page up and running in the near future too.

 Thanks in advance.

Perry

 

Busting Out

It's official. We are busting out of this place. We should be leaving in the next few hours.

We'd appreciate continued prayers for our transition home as well as for all the children and families here that aren't as fortunate as ours to be heading home.

Please say a special prayer for "the other Cooper," whom I wrote about last night.

A Weird Twist

We found out today that the family in the room across the hall from ours share a mutual friend.

And their son is named Cooper.

And he has a heart condition that has required several surgeries.

Please pray for Gina, Dustin and Cooper that God will be with them, strengthen them and, most importantly, heal their Cooper.

One More Hurdle Down

Echocardiogram done. Femoral line out. Resting comfortably in momma's arms.

Friday Morning Update

The medical team just left. They are going to keep him until tomorrow. They are going to try to put him on a second blood pressure medicine, give an echocardiogram and take out his femoral line.

They said we should be released tomorrow morning. Thanks for keeping us in prayer.

Dr Gus

The man and the LEGEND - Dr. Robert Gustafson - Dr. Gus. Please say special prayer of thanks for Dr. Gus and his gift.

Medical Rounds - Thursday

Coop had a fever last night. So they gave him some Tylenol and that brought his fever down. They want to keep an eye on his temperature and get a blood culture to make sure there's no infection. Thanks for all the prayers and support.

Snuggling for the Night

Here's a better picture of Coop and momma. X-rays are completed. Nothing but snuggling ahead.

Another Hurdle Down

Coop got the drainage tube removed from his back. While we're waiting for an "after" X-ray, mommy gets some snuggle time

Medical Rounds - Wednesday

The medical team just made their visit. The doctor said that Cooper has "the easiest blood pressure to control in recent memory." He received the ok to eat formal and drank 5.5 ounces in 10 minutes.

His final IV med is ready to run out and won't be replaced. He will get another chest X-ray this afternoon. His X-ray from this morning "looked great." There is a chance he could get his drainage tube out this afternoon.

Thanks for your continued prayers.

Cooper in Jail?

Coop sat up last night on his own, so they put him in jail. Seriously though, he had a great night of sleeping and hopefully recovery.

Victory Over Blood Pressure

The doc just declared "victory over blood pressure." Coop's arterial line will come out tonight. Another one down...

Three Feedings...

We are up to three 1.5 oz feedings of Pedialyte. No formula until the morning. We'll keep you posted.

Progress

His blood pressure has also stabilized. Because of his condition, he had higher blood pressure in his upper body. So they had arterial lines in both his wrist and leg to have continuous pressures they could compare. And the pressures stabilized and were similar, so they removed the line from his wrist.

Fighter's Eye

Another of the side effects is a swelling, which is mostly in his left eye. When he was sitting up, we put on Mickey Mouse Clubhouse. He knew it was on.

Sit Me Up

He did so well with the Pedialyte that we were able to sit him up (all those wires are for his EKG).

Pedialyte

Coop is doing well enough that we are going to try 1.5 oz of Pedialyte. Let's see how this goes.

Round One With The Medical Team

The medical team said that Coop is progressing remarkably well. Thanks for the prayers and please continue them.

Sad Reality

Our first night also showed us a sad reality - children having to spend the night alone in the PICU. We aren't judging parents - maybe they have other kids, jobs that aren't as forgiving, etc - but please keep these children who I'm sure are scared and lonely in your prayers as well.

Please Give Thanks

It's really easy to only reach out to God in desperate times. We must remember to also thank God for all He has done for us. In your prayers, please thank God for all He has done for Cooper to this point. And we appreciate continued prayers for no complications and healing.

Today's Message

I've mentioned that my Aunt Sharon sent me a devotional. Today's devotional starts out:

You have been on a long, uphill journey, and your energy is almost spent. Though you have faltered at times, you have not let go of My hand. I am pleased with your desire to stay close to Me.

Our First Night....

Cooper did well last night. He woke up several times and had to get X-rays at 4:00. But he seems to be resting comfortably.

His incision is on his left side, which is where he typically sleeps. And because of the epidural, his upper body is numb between his chest and hips. Once our nurse Christy helped him get situated on his left side, he was much more comfortable.

Out of Surgery

Coop is out of surgery. They were takin g the breathing tube out and he has to get x-rays before we will get to see him.

Dr. Gus said that he was able to cut out the narrowed section and stitch top and bottom together.

However, there could still be life changing complications that we won't know about for at least the next 24 hours.

Please continue to pray for him.

Beautiful Distractions & Beautiful People

Yesterday (Friday) I watched my little sister marry an incredible man. The couple was SURROUNDED by family and friends who love them - you could just feel what the two of them meant to everyone there. It was a beautiful day and we even answered the age old question, "how do you keep your wedding day stress to a minimum," - have 11 bridesmaids and make sure at least 30 to 40 percent of them are UBER bossy :) The day went off without a hitch - well, except for forgetting the wedding dress at the house and turning around for it because, let's face it, it's a pretty important piece of the puzzle. I also may or may not have accidentally left my sister at her rehearsal dinner :)

Anyway - there are several reasons I'm writing about the wedding, the first of them being I almost had to miss it as Cooper's surgery was initially scheduled for October 3. I was prepared, and my little sister was incredibly understanding, but God made it all work and I was honored to stand next to one of the people that means the most to me in this world! The second reason for writing about the wedding is that I met, talked to and truly connected with so many people - from my own family, to Brendan's family to even Sandy AND Brendan's friends - that reminded me that Perry, Cooper and I are NOT alone and that we are stronger than we know. The hugs, the cards and the brief conversations meant so much to me, and I know that God had a hand in creating a perfect day for Sandy and Brendan with some sprinkled bonuses for The Cunningham Family. I walked away with TWO very important tokens that I will no doubt have on hand Monday. The first, my little sister's 1927 penny - one of HER wedding gifts that she gave to me WITHOUT HESITATION -  (a long story but one that has everything to do with my granddaddy who passed away in 1999 - my heart still aches for his bear hugs and the way he made everything OK) and the second, my granddaddy's handkerchief (another long story) from my Uncle Brian who has kept it safe for moments like this when STRENGTH and COURAGE are needed. My Uncle Brian is a special man who has always treated me like his own little girl, so let's just say the exchange of the handkerchief was definitely an emotional one. The third reason for writing about the wedding is, it has been the BEAUTIFUL distraction that has kept me focused on something other than SURGERY DAY. From small jobs, to traveling, to a few busy days of helping with last-minute details (including ironing linens - that one's for you mom) and even a reception that I will not soon forget, I have welcomed being caught up by something fun and exciting. SO WHAT NOW???

I also wanted to take a second to THANK everyone for the phone calls, texts, cards, gifts, etc. We have received AT LEAST one card per day for the last few weeks - an incredible blessing and definitely a source of strength. On my last day of work last week, I opened a card filled with gift cards and gas money from coworkers that had pulled together to collect for my family and I, wanting to do SOMETHING, ANYTHING, to help us through. I was shocked and emotional, but I just kept thinking, "people are amazing and we are not alone in this." I was beyond touched by the gesture and still can't believe the generosity. Even my sister's best friend (who recently went through a similar scary surgery with her own little girl) slipped a card into our diaper bag after the wedding (I think - we just found it) to let us know that she is there and thinking of us. The title of this blog, "Beautiful Distractions & Beautiful People," is simple but also so perfect for the last few weeks.

So it's almost Sunday and I really just want time to stand still. As ready as I am to get things over with, I'm scared for my little boy and I'm having trouble not thinkng about all the things that we will see and do in the next week. I am strong and my faith is strong, but my baby is still my baby.

I have no doubt that people like you who are reading this right now are the ones getting us through, so please continue to pray. Pray specifically for strength and comfort and OF COURSE for the surgeon as he works and for Cooper as he heals, that he is comforted and that things are as easy as they can be for him. There are a lot of SCARY POTENTIAL effects of the surgery with very small percentages, some of which we won't know if they've occured until days later, but I can't get them out of my head and I want to be free from those thoughts, so if you could pray for that too, I would be so grateful.

Mary, SS. Luke the Evangelist and Raphael

A lot has crossed our minds over the last few weeks to say the least. And as I mentioned earlier in the week, the magnitude of things as surgery approaches grows.

I just got off the phone with the hospital and finalized everything. We have to be at WVU at 6:15 on Monday to register.

So we continue to pray as much as we possibly can.

Being the Catholics we are, we believe we can pray to the Blessed Mary and the saints and they will intercede on our behalf.

St. Luke the Evangelist is the patron saint for those going into surgery and the patron saint of surgeons. St. Raphael is the patron saint of healing.

Below is also one of the prayers from the Catholic prayer book that we've been praying to Mary. And it's not specific to surgery, but to anything that is burdening life.

Thanks for the continued thoughts and prayers.

Memorare

Remember, O most gracious Virgin Mary, that never was it known that any one who fled to thy protection, implored thy help or sought thy intercession, was left unaided. Inspired with this confidence, I fly unto thee, O Virgin of virgins my Mother; to thee do I come, before thee I stand, sinful and sorrowful; O Mother of thy Word Incarnate, despise not my petitions, but in thy clemency hear and answer me.

Amen

The Reality of Surgery

Today was a long day. While we were only at the hospital for about four hours, it seemed like we were there for several days.

Coop got his chest x-rays and blood work. We met with Dr. Gus, - Coop's surgeon - two of the PAs, Dr. Rosen - the anesthesiologist - among others.

The most serious of the meetings was with Dr. Gus. I know that there are possible complications with every surgery, but they are still difficult to hear and imagine.

Through it all, you hear percentages of "less than .5% of this or these four
conditions combined don't equal 2%." But I kept thinking back to our IVF transfer.

When we were deciding how many embryos to transfer, we had a choice of up to three (we only had three viable ones and that was the most WVU Center for Reproductive Medicine would do regardless). And the doctors kept saying that, if we chose all three, the chances of all three implanting were less about 1%. But to that one person it happens to, there is a 100% chance they will carry three babies and there is an increased risk with triplets.

So I kept thinking and are still thinking, even though the chances are minimal, they are real. And they have happened.

Please keep us in your prayers. We need them now more than ever. Reality is slowly, but surely creeping in.

Please pray that God will be with Dr. Gus and his team. Please pray that surgery and recovery go well. Please pray that there will be no long term complications.

We found out that the first 24 hours after surgery are the most critical. Please pray that by this time next week - next Wednesday evening - everything has gone as well as it could.

After our appointment, we drove to Virginia for my sister-in-law Sandy's wedding. For most of the way we listened to the Christian music playlist on my iPod, which mostly features Casting Crowns, Third Day and Mercy Me. At one point, Pam asked me what was my favorite Bible verse.

I don't really have an answer as to why it is, but it's Matthew 21:21:

And Jesus answered them, “Truly, I say to you, if you have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, ‘Be taken up and thrown into the sea,’ it will happen.

I remember reading at one point in the last few years to not have faith in your faith. But have faith in God and in Jesus.

Please pray that our faith in God and in Jesus will remain as strong as ever.

Thanks.

Is a Dream Only a Dream?

Pam and I had dinner with some of our great friends about a week and a half ago. At some point after dinner, we started to discuss dreams with Kim and Randy - sleepy dreams, not life goals. During the conversation, I let everyone know that I rarely wake up remembering a dream.

Fast-forward to last night. Pam was having a rough evening after putting Cooper down for the night (as evident by her post). I've heard that our dreams are impacted by the events of the previous day. But when I woke up this morning, I asked myself "was that a dream or was it a sign?"

Let me give you a little background information first....

I am active on the board of directors for the Greene County Habitat for Humanity. One of the founders of our affiliate is the Rev. John Dorean, the pastor of Jefferson Baptist Church. To say that John is well-known and well-respected would be an understatement.

Back to my dream......

I was sitting at work in a cubicle (I really don't have one). It was early in the morning and I was surrounded by all the things wonderful people had brought me to either get through the day or comfort me. Coffee cups. Energy drink cans. Cookies. Candy. Crackers. Empty beer cans.

John came by and immediately saw the empty beer cans. Here is our conversation.

John: Perry, what the hell are you doing drinking this early? (for the record, I haven't relied on alcohol to get me through this)

Me: Thanks for the support John (sarcastically). How do you expect me to get through this?

John: I have a better solution Perry. It's called prayer and Jesus. You know, as a pastor, I always thought I had a gift to talk to anyone and everyone and I would keep their attention. I once had a goal to be able to keep attention for 90 straight minutes. So I was taking a trip with a guy that I barely knew. I decided to, not necessarily preach, but just keep his attention about religion for 90 minutes. And you know what?

Me: It worked?

John: No. It failed miserably. I was successful for about 15 minutes before our conversation turned to something else. But you know who's attention I can keep for 90 minutes?

Me: No, John. Who? (again sarcastically and anyone that knows me can probably picture me saying this)

John: God and Jesus. And it's done through heart-felt prayer.

And that was the end of the dream. No lie. I promise. And I remember it as vividly as I described it.

On a similar note, my Aunt Sharon sent us Sarah Young's devotional Jesus Calling. When we received it late last week, I figured I'd start on October 1. Here is the short devotional for today and, again, does it seem like a coincidence? Probably not.

Worship Me only. I am King of kings and Lord of lords, dwelling in unapproachable Light. I am taking care of you! I am not only committed to caring for you, but I am also absolutely capable of doing so. Rest in Me, My weary one, for this is a form of worship.

Though self-flagellation has gone out of style, many of My children drive themselves like racehorses. They whip themselves into action, ignoring how exhausted they are. They forget that I am sovereign and that My ways are higher that theirs. Underneath their driven service, they may secretly resent Me as a harsh taskmaster. Their worship of Me is lukewarm, because I am no longer their First Love.

My invitation never changes: Come to Me, all you who are weary, and I will give you rest. Worship Me by resting peacefully in My Presence.

Thanks to all who continue to pray for Cooper, us, Dr. Gus and his team, Coop's surgery and recovery and no complications among other things. We truly appreciate everyone who takes time out of their day, among all the other intentions you have on your own heart, mind and soul, to pray for our family.

One Week

Although I had so much work to do today (grading papers, lecture preparation and creating my midterm) I also had such a fun day playing. We read through a few prayer books, I pulled out every book that makes noise just so I could watch Coop's face light up and his head tilt in confusion, we soaked the ENTIRE bathroom at bathtime with the huge waves we made with our boats and Coop's BIG BOY splashing :) It was such a fun day and I truly soaked in every little second with my baby.

I don't have anything in particular to write about, but I'm feeling the need for prayers. I know many of you are praying, have been praying and will continue to do so, but I have a special request for specific prayers this week (as if you aren't doing enough). I keep feeling my stomach sink and a lump form in my throat when I think about "surgery day." I've spent the last few months trying to take one step at a time or acting as if nothing was even wrong. Well now, almost exactly a week from surgery day, I can't deny what's going on in our little world. During our play today, I can't tell you how many times I thought "we won't be able to do this" or "Coop won't be able to do that." I count my blessings that we have medical insurance, great doctors, nurses and surgeons and that Coop's issue was found and will soon be taken care of, but that doesn't make my anxiety level decrease.

I'm one of those people that needs a little time to mentally prepare for something, so this evening I decided I was going to be a little proactive and "help" myself prepare. In doing so, I decided to google "infants after heart surgery" (DON'T DO THIS) because I wanted to see what I would see after Cooper's surgery. I'm not sure I've ever had the feeling I had the moment my search results loaded on the computer screen. My little baby - I can't believe that my little baby has to go through this. I'm at a place now where I'm just angry and confused and I want all this to just go away.

So I'm scared and I'm not as strong as everyone has been telling me I am, and I have a feeling that as this week goes on and next Monday gets closer, we'll need your prayers more than ever.

We Survived the MRI

Our day is finally over. Cooper was a trooper and Pam was awesome. The day was a little more hectic than we anticipated, but it also wasn't as difficult as we anticipated emotionally.

Cooper appearing calm right after changing into his gown.

Cooper's appointment was supposed to be at 4:45 and because he had to be under anesthetic, he couldn't eat formula after 8:45 and couldn't have Pedialyte after 12:00.

He did great through the pre-admission. We were sent down to Imaging around 3:15 and told the pediatric anesthesiologist would meet with us around 3:25. We were a little concerned that maybe, if he was taken early, he wouldn't have fasted long enough.

I'm sure you already know where this is heading....

3:25 turned into 4:00. At 4:15, the anesthesiologist, Dr. David Rosen, came out and talked with us. He said they were just finishing up another pediatric case and they'd be with us "shortly."

By 4:00, Coop had had enough. He was screaming and crying. Pam pulled out every toy we brought. That eventually turned into walking up and down the halls and making a pass by the restroom to look in the mirror.

At one point, during his meltdown - he hadn't eaten for eight hours by this point - one of the employees asked Pam if she had brought any toys. I guess she had no way of knowing that he was the one having the MRI and maybe thought he was just fussy.

Finally at about 6:00, we were called back to a prep room. Dr. Rosen administered one anesthetic by nose, but, similarly to UPMC a few weeks ago, that didn't really work. About five minutes later, Coop was given a shot in his shoulder and within five minutes, he was out.

Pam placed him on the bed and we were able to kiss him as we made out way to the waiting room.

It wasn't as emotional as we thought. It was difficult to leave, but I guess we knew that he wouldn't be undergoing any surgery - just laying motionless in the MRI.

We were called back a little before 8:00. Dr. Rosen said that everything worked perfectly and the shot worked so he didn't have any anesthetic through the IV. But he did have an IV as that's how they administered the contrast for the MRI and gave him a saline solution.

Dr. Rosen said that they'd leave the IV port in for about 15 minutes just to make sure there was no reaction. Pam was able to feed Coop some apple juice, though he only ate about an ounce and half before falling back to sleep.

While we were waiting, Dr. Malek - the pediatric cardiologist making sure the MRI was taking adequate pictures - met with us to go over the "raw" results. He warned us that he had only briefly reviewed the images and hadn't done any measuring, so his information would be limited.

Dr. Malek said that Coop's body had produced extra vessels around the heart. This is most likely the reason he has shown no symptoms. But this could also be an indication that the coarctation - or narrowing - is severe.

I, of course, asked question he couldn't answer yet, just trying to get any details about surgery. From the sounds of it, a simple cut and stitch is most likely out of the question. They will either have to use an artificial graft or the subclavian flap repair, where they can use the existing subclavian artery to redirect blood.

We saw Dr. Gus in the hall before the MRI and he said he wouldn't see the MRI images until tomorrow.

So now we wait again. We aren't sure if we will get a phone call in the next few days or if we will figure out the course of action when we meet with Dr. Gus again next week.

The Taylor Wedding

In the last few weeks, so many strange/wonderful things have happened on the spiritual side of all this and I just wanted to share.

First of all, last weekend, one of Perry's college friends got married. The wedding was at this beautiful place in Wheeling - The Capital Music Hall. The ceremony was breathtaking and part of me felt like God also made that day for Perry, Cooper and I. I felt a little guilty about that at first, but because I truly know what type of person Lucas is, I knew he wouldn't mind. I also know that God probably told Lucas, "hey, I know you don't mind, but there is something else I have to do with YOUR day."

I know that sounds strange, but before the vows, the pastor began talking about how Lucas and his beautiful bride (Kaitlyn) wanted this day to be about their guests just as much as it was about them. The scripture verse Romans 8:28 said: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." So as the pastor related the verse to Lucas and Kaitlyn, I couldn't help but let my mind wander (sorry Luke) about how that verse fits our current situation. The funny thing is, as I felt tears streaming down my face and tried to refocus on the beautiful couple on the stage, the Pastor actually said, "some of you may feel like I'm speaking directly to you, and that is probably because I am." SO - in that moment, I KNEW for sure that God wanted me to feel His presence and to rest assured that He is truly in control

So not only did I feel the insane amount of love in that place, but I felt like God was using Lucas and Kaitlyn's day to reassure us that things were going to be OK if we lean on Him, trust Him and love Him.

So, you would think that the ceremony alone provided enough clarity for us, well we did, but God was finished!

Following the ceremony, we attended the beautiful reception where Lucas' mom, this AMAZING Christian woman unselfishly sought us out and spent A LOT of time (especially considering it was her son's day) with us talking about the course of action for Cooper's heart surgery. After about 10 minutes went by, she grabbed me and hugged me and asked me if she could pray for us. So right there, at the edge of the dance floor with loud music playing and people dancing, we prayed. It wasn't a short prayer either, it was a beautiful, long prayer spoken from a mom who understood my heartache and said everything I tend to say on a day-to-day basis. She "got me," and she knew just what to do.

It was an incredible day.

So fast forward to today, Sunday, September 23. GAH - as I wrote the date just now, I realized I forgot my mom and dad's wedding anniversary.

Anyway - today's mass was about Children and their innate ability to 1. live in the present moment and 2. trust completely. Coincidence? I think not. I had this image of God wrapping his arms around His children and for a second I wondered if the message meant specifically small children (Toopey's size) or if I could place myself in the message. So I did just that and I actually felt God wrapping His arms around me and I was able to take a big, deep breath and feel a sense of peace.

Again, you think God would be finished. . .nope. I'm beginning to think that God doesn't do anything on a small scale OR maybe He just knows I'm stubborn and hard-headed. Well, after mass ended, this man sitting behind us grabbed me by the shoulders and whispered in my ear, "God has prepared a special gift for you, you just pray." As soon as he said it, I of course lost it, looked at Perry and his mom (she was at mass with us), and Perry of course immediately said, what did he say? I've seen the guy at mass before, but I know nothing about him, not even his name. As we approached the car, I thought about running back to ask him how he knew or if God told him to tell me what he just told me. After I thought about the message - live in the present moment and trust as a child would trust, I decided it wouldn't be a good idea. Instead, I will just trust.

So tomorrow is MRI day. I'm exhausted but full of anxiety, sitting at my dining room table drinking ginger ale. As I sit here filled with anxiety, I know that ultimately it will be so good for the doctors and surgeons to know EXACTLY what to expect on surgery day.

Coop has to be at the hospital at 2ish tomorrow to prepare for his MRI. His actual appointment for the MRI is 4:45, so its going to be a long afternoon and evening. He will be put under and will have a catheter and can't eat after 10 a.m. (he's a piggy so this will be tough for him), so I know that tomorrow will mark the first of many difficult days in the next few weeks. We were told that we would have the MRI results Wednesday or Thursday, and at that point the cardiologist and surgeon will decide the course of action for surgery.

So please continue to pray for us and share our story so that your friends and families can pray. I want God to have hundreds of voices in His ear for Cooper - thinking of that gives me AMAZING hope. Some of you have talked to me about being angry at God. I have gone through that emotion as well and sometimes it still rears its ugly head, but ultimately I know that I just have to trust and so that is my choice, and I hope that you will follow me.

Goodnight everyone!

Up Next: An MRI

After dropping off Cooper's images last week, we've been waiting to hear what's next. While we scheduled surgery, Dr. Gus and Dr. Einzig were still contemplating whether to order an MRI or a CAT scan.

We now know that Cooper will have an MRI late next Monday, Sept. 24. He will be under an anesthetic, but hopefully, because of the small dose, it will only take about 30 minutes to recover.

When I talked on the phone with Dr. Gus, he was still unsure whether he would be able to cut out the narrow section and suture the top and bottom or if he'd have to put in an artificial graft - the unknown being the reason for ordering the MRI.

We are continuing to hope and pray that in three weeks from this moment - 7:30 PM of Oct. 8 - Cooper's surgery has been a success and he is resting comfortably with his issues fixed. Thanks to everyone who is doing the same.

Let the Countdown Begin...

Our long wait is over. Cooper has a surgery date. We found out that Cooper will have his surgery the morning of Monday, October 8.

After the saga of the picture CD, Dr. Gustafson's PA, Tammy, called us this evening to let us know that both Dr. Gus and Dr. Einzig reviewed the disc. She said that it appears that Coop's coarctation is long, which means that they will more than likely have to insert an artificial graft instead of simply cutting out the narrowed section and attaching the top to the bottom.

Dr. Gus and Dr. Einzig are supposed to meet again to discuss if a MRI or CT scan is necessary. Tammy said that an MRI will provide much clearer images, but a CT scan will allow them to view pressures.

We let her know that, for our own peace of mind, we would be on board with either to ensure a clear plan is in place before surgery and there aren't any surprises in the operating room.

Although the thought of him being put under is scary, if that makes his surgical team more prepared, then we are ok with that.

It's Not About Me

As I sat in front of one of the sweetest people we have dealt with through this entire process, I had the heartbreaking realization (no pun intended) that this is not about me anymore! I keep saying - suck it up and get on your big girl pants. By the way, my pants are getting tight from all the chocolate deliveries in the past week - I'm certainly not complaining. In fact, I received a one-pound Reese's cup last week - how do you even begin to eat that???? It looks like a birthday cake sized Reese's cup.

ANYWAY. . .back on track. . .

Have you ever received news you didn't want to hear, and immediately following you just shut down and feel like you're in some tunnel with voices echoing around you. I almost picture myself sitting there shaking my head as if to clear something from my ears like I didn't hear this woman correctly when she told me I wouldn't be able to hold my baby for two to three days. WHAT???? I never signed up for that part, come to think of it, I never signed up for ANY OF THIS. How does a mommy just accept the fact that she can't hold her baby. The crazy thing was, in that moment, as I sat there dumbfounded crying, I looked up at Perry and he had tears in his eyes and he said those tears were for me, because at that moment he felt my sadness and I know it hurt him. I've always known how incredible my husband is, but at that moment we connected on a level far deeper than anything we've ever experienced. We know that we have to be strong for our baby, and we also know that we have to hold each other up. There is no doubt in my mind that we will do that.

I heard so many things I didn't want to hear today and I'm still processing what they mean: tubes, IV nutrition, 48-hours with no "ba-bas" or his favorite food (what we call "squishy, squishy squash"), blood pressure medication, pain medication, a three-day sedation, and the list goes on and on.

SO - we wait for tomorrow or maybe Thursday. . .

How Far is 100 Miles?

On Thursday, September 30, we headed to WVU to go over Cooper's echocardiogram with Dr. Einzig, Cooper's cardiologist. When we arrived at the hospital, we expected to receive information related to his echocardiogram which was performed the week prior. Perry and I fully expected to learn more about Dr. Einzig's professional opinion, and we hoped to leave WVU with an idea about when Cooper's surgery might be performed.

We checked in, waited for a short time and were called back by one of Coop's FAVORITE nurses. A few tests were performed and we were put into a room to wait for Dr. Einzig. We were told that Coop would probably have his FOURTH (one at WVU and two at Children's already) echocardiogram. For those of you familiar with Cooper's story bear, "Cooper did not want to do that."

We hadn't been waiting long when Dr. Narumanchi, Coop's pediatrician, stopped to check on him and say hi. In all the ups and downs, it meant the world to us that she had made time to stop in because she truly and genuinely cared about him.

Dr. Einzig arrived and asked if we happened to have Cooper's echocardiogram photos from his appointment at Children's the same week (September 27). Although a release was signed for the photos to be sent, they had not arrived at WVU. One of the nurses called Children's for us, they faxed over the report related to the echocardiogram right away and said they would "mail" the CD with his photos. SO, we left WVU after Dr. Einzig decided not to put Coop through another echocardiogram. Instead, he decided to wait for the photos from Children's and make a decision as to whether or not Cooper would need to be put under for an MRI to get better photos before surgery. We left the hospital expecting a call by Tuesday or Wednesday, September 4 or 5.

Today is September 11 and the flippin CD is STILL NOT AT WVU. I called WVU EVERY DAY from Tuesday through today to see if they had received the CD, driving everyone crazy I'm sure. Yesterday, when the CD was still not at WVU, I called Children's to see what the heck was going on. At that point I found out that the CD was sent SNAIL MAIL with no tracking number. HOW ON EARTH do you send someone's medical records through the mail with no tracking number.

SO - after waiting a week and a half for a CD and wondering if our baby was in danger, I called Children's to let them know that someone would be there to pick up the CD today. The woman I spoke to on the phone was seriously the most insensitive person I have EVER dealt with. As I'm sobbing and telling her that the cardiologist at Children's recommended surgery within a week (which would have been last week) and that I was concerned that Coop was in danger, she proceeds to cut me off and ask what time the CD would be picked up with absolutely no response to anything I said about my child being in danger. It felt as if she had put the phone down while I was talking - it was the only explanation I could think of considering I cannot believe that people are truly that insensitive. Today, Perry drove to Pittsburgh to pick up the CD so that we could make sure the CD was in the hands of Coop's cardiologist at WVU TODAY.

The surgeon's assistant at WVU (Tammy) was the SWEETEST and sat and answered EVERY question we had and said Dr. Gustafason (the surgeon) would be reviewing the CD this evening or tomorrow, and they would be in touch soon.

So the question for this past week is - HOW FAR IS 100 MILES and HOW LONG DOES IT TAKE A PIECE OF MAIL TO GET FROM PITTSBURGH TO MORGANTOWN.

SOOOOO - we're closer to a surgery date.

The Dreaded Question

It's strange how you feel like you have yourself together, and then IT HAPPENS - someone asks you the dreaded question - "how are you today?" or "how are you holding up?" I've never thought for a second that it was meant to be anything other than heartfelt or sincere - but it always crushes me to have to answer. I told Perry that today I just want to hide under a big rock!

I have a little time left on my lunch break so I thought I'd sit and write. It's funny how usually I'd be pouring myself into my work, but for the last week and a half I've felt so fuzzy, unfocused and forgetful. You can't make excuses at work though - you have to go on like nothing is wrong, smiling and nodding when you can feel tears welling up in your eyes, your heart in your throat and anxiety beyond anything you've ever felt. It's also funny how problems that once seemed so big have become so small, and I can't tell you how many times per day I want to tell people that the thing they're going off about is NOTHING compared to what is about to happen to my baby. Instead, I try to be the person that realizes that just because it's nothing to me, it might be the only "big" thing going on in their life right now.

Let me start by saying THANK YOU to everyone who has messaged, commented or e-mailed about how inspiring our story and our faith is - WARNING - I'm about to rock your world! TODAY, I'm not OK. I'm seeking God and channeling my faith but as the day to schedule my precious baby's surgery gets closer, the reality is starting to sink in. I'm ANGRY and SAD. I'm not writing to elicit sympathy from anyone, I'm sharing my feelings with the hope that this blog will either help someone else, or help me to find peace through writing out my feelings. I'm having trouble understanding the WHY. I felt like this a lot when we couldn't get pregnant. . .which leads me to my next point. I feel like I've already lived my "hell" in everything we had to do to get "Toopey" here, and I'm so mad that he has to go through any of this.

I made a promise to my baby when he was just a few days old that I recently had to break - which has been one of the hardest parts of all of this. I told him that I would never let anyone or anything hurt him. I never realized how bad breaking that promise would hurt me. You feel hopeless, like you should be able to do something to help your child, and I wish that I could be the one to go through the surgery.

So for our wonderful support system - you now know that I'm normal. I'm hurting and I'm angry and I'm trying to remain faithful. I find strength in your encouraging messages, the Bible verses and knowing that we have some pretty awesome prayer warriors pulling for us.

That's Not Exactly What I Meant

For those of you who know me, you know that I'm not exactly the most patient person in the world. I want what I want when I want it, and that's it. Thank God I found a man who isn't afraid to remind me that God is in control and gives me a reality check every now and then. I keep thinking we're going to wake up from this bad dream or that we'll be able to pull out a mousekatool to fix everything. So far, no such luck.

The wait from Thursday to this Tuesday or Wednesday has seemed like forever. In a few short days, we'll know our next steps and we'll be able to figure out if the doctors need clearer pictures, which means Coop will need an MRI  (he'll of course be put under). If the MRI is not necessary, we will  schedule surgery next week and begin preparing for whatever that means. I've watched Cooper over the last three days as we've played, and I CANNOT BELIEVE that he has something so serious wrong with him. I have guilt that we've missed a symptom or that we/I did something to cause this, but we have been assured that he had no symptoms (that we could physically see) and I of course was more careful than most from even before I was pregnant. Thank God Cooper has a wonderful pediatrician who was concerned by a clicking noise that she heard at his 4-month check-up. Cooper is growing beautifully, he goes after what he wants (like his momma), he loves playing at the park and he's super happy and smiley. He's even taken on a dinosaur noise - which I feel is God's reminder that he is STRONG - RAWR. I just don't understand.

So you know how you pray for things and the outcome seems slightly different than how you imagined it? A few days ago, I thought back to those trying times when we prayed and prayed and prayed for Coop (Toopey to momma and dada). I remember saying God, please bless us with a child and I promise I will make Your name known through him/her. So over the past few days, we have received cards, messages, facebook and blog posts, phone calls, e-mails and even people reading our blog (more than 900 views), and I can't help but think Cooper is making God's name known. I've made good on my promise, and I will continue to do so, I just didnt mean that something needed to be wrong with Coop to make that happen. Don't get me wrong, I'm not blaming God, just trying to find humor in the irony of the "that's now exactly what I meant."

Perry and I continue to be strong (for Cooper), and we will continue to rely on our faith. I have moments where I want to yell at God and/or lay on the floor and throw a tantrum like a 2 year old. I've shed a lot of tears and church was especially difficult yesterday - again, I had an incredible man by my side, his arm around me and even wiping away my tears. It's funny how you go from feeling incredibly blessed to asking God, "Why?" Ultimately, this is not about me or Perry, its about Cooper and we're going to be the strongest, most faithful momma and dada we can be for our baby.

SO, what can you do? Continue to pray. Thank God for Cooper, don't be mad at Him and put your faith in His wisdom, guidance and goodness. I have no doubt that this will be a long, hard road, but fortunately we are people of faith.

From the Beginning....

Information is starting to slowly filter out into the world of social media. We figured we would start a blog to keep our family and friends updated. By starting a blog, anyone without a Facebook account (we are mainly talking about Aunt Joanie and Uncle Mark) can stay current with Cooper's status.

Cooper needs heart surgery. He has a condition called aorta coarctation, which is a congenital heart disorder. His aorta is narrowed which puts stress on his heart and makes his heart work faster than it should. He has abnormally high blood pressure in his arms and lower blood pressure in his legs. It is tough, if not impossible, to find a pulse in his lower body.

This journey started at a doctor's visit for a chest cold when he was around four months. His doctor detected a murmur that she hadn't heard before and said that she would track it as it could have been attributed to what was diagnosed as an upper respiratory infection. She said that she would listen for the murmur again at his sixth month appointment.

At his sixth month appointment, Dr. Narumanchi again heard the murmur. But Cooper had a fever, so he couldn't get his shots. So he had to come back a few weeks later to get his shots and she said that she wouldn't move forward with the next step until then.

We went back to WVU Pediatrics a few weeks later in the middle of July for his shots. Dr. Narumanchi heard the murmur again and scheduled an echocardiogram for the middle of August.

We had done a little research about murmurs. We found that upwards of 90% of kids are born with some type of murmur and murmurs usually clear up as children grow.

We figured that it was a typical murmur and would go away. While we were a little concerned about the fact our pediatrician was scheduling the echocardiogram, it didn't seem like an urgent condition. So we figured we would show up to the echo, the technician wouldn't find anything and we'd be on our way, taking care of the miracle that we were so blessed with a few days after Christmas

For those of you who don't know, Cooper is an IVF baby. Pam and I tried to get pregnant for over three years. After a little over a year of unsuccessfully trying, we finally sought help at the WVU Center for Reproductive Medicine (CRM) in Morgantown. The CRM tried several different options that all failed.

After a failed attempt in January 2011, the CRM said our only option left was IVF. We decided to move forward in March. Our retrieval date was April 6 with the transfer of embryos on April 9. On April 23, Pam's final blood test showed that she was pregnant.

Fast forward to his echocardiogram.

We asked the technician when we walked in if she could tell us anything and she of course replied no. She told us that our pediatrician would be in touch with us to go over our results. About ten minutes into our exam, someone called for her from behind the curtain. She responded that she'd be finished in "about 15 minutes." With simple math, I figured we be out of there in about a half hour.

Cooper wasn't the calmest baby during the exam. He was a little squirmy, but given the circumstances of lying on an exam table, I thought he was pretty good. So when the exam passed the 30-minute mark, I didn't really think anything was wrong.

About 40 minutes into the echo, another technician came into the room and the technician examining Cooper asked her a few questions. They were talking quietly and in medical terminologies. Pam and I looked at each other. Something didn't seem right.

After about 60 minutes, the technician said she needed to go get the cardiologist to make sure some of the pictures were clear enough for him. A few minutes later, a pediatric cardiologist came in and was directing the technician as to what pictures to take. It was evident that Coop wasn't in perfect health.

Though we were told that we wouldn't be told the results, the cardiologist told us Cooper's condition. While I appreciated his straight forward approach, it was shocking to hear, especially when we had prepared for news of a healthy baby. Cooper needed to have surgery within the next few months.

A million thoughts ran through each of our minds. Did we miss any symptoms? What was the background of the surgeon? Should we seek a second opinion? Did IVF contribute to this? How quickly did this have to be completed? How long would it take to recover? Will he be able to lead a normal life? Sports? Roller coasters? Doctors visits for life?

There are several symptoms of the condition, most of which Cooper did not have. His feet, toes, hands or fingers never turned blue. He wasn't underweight. He wasn't lethargic.

Our thoughts immediately turned to the surgeon at WVU - Dr. Robert Gustafson (Dr. Gus for short) - and we tried to find as much out about him as we could. We found nothing but great things about him. I talked to a friend whose stepdad works at Mon General, the other hospital in Morgantown. I asked her if he would allow Dr. Gus to work on her son and the answer was "absolutely." Pam talked to two of the nursing faculty members at Waynesburg University, where she works. Both faculty members know of Dr. Gus and Waynesburg's nursing students do their clinical work at WVU. I talked with a friend that is a profusionist in Ohio and asked her to look into Dr. Gus.

Pam reached out to our fertility doctor and he said he would trust Dr. Gus with his two children without hesitation. I talked to a nurse who had done clinicals at WVU. We found out through a co-worker that other hospitals from Ohio send patients to Dr. Gus. Pam heard that Dr. Gus even invented a procedure that saves children from a condition that was once untreatable. We heard other stories from friends, friends of friends and strangers about their experiences with Dr. Gus. Not a single one contained a shred of negative or even neutral feedback.

Pam and I still felt that because of the seriousness of the condition, we needed to seek a second opinion. Since we waited about a month between our seven month appointment and the echo, we weren't sure if UPMC Children's Hospital would be able to see him in the next two months.

On Friday, Pam called UPMC and told them about Cooper's diagnosis and how quickly WVU wanted to proceed. Within a few hours, UPMC called Pam to let her know that they would evaluate Cooper on Monday afternoon.

We spent a good part of Monday afternoon and into the evening - more than five hours - at Children's Hospital. They did two echocardiograms, an EKG and a full evaluation. We met with Dr. Jacqueline Kreutzer, a pediatric cardiologist and Director of Cardiac Catheterization, and she informed us that she agreed with the diagnosis and that surgery should be completed as soon as possible.

Both hospitals had the same diagnosis. The next question was who should we ask to perform the surgery?

It seems that everyone we asked immediately answered UPMC. But only one person - my cousin - had first-hand knowledge of UPMC. UPMC is a bigger hospital. It is world renowned. It does more research. It is a better known place. But we didn't know much about the surgeons. We hadn't heard many things about the surgeons, mainly because most of our sampling was skewed toward Dr. Gus and WVU.

This afternoon (Thursday, August 30) we had our consultation appointment with Dr. Stanley Einzig, a pediatric cardiologist at WVU. Both he and Dr. Gus had received a letter from UPMC letting them know that they agreed with the original diagnosis, but they didn't receive the full report or any of the echo pictures. Dr. Einzig suggested that, instead of putting Coop through another echo, because UPMC sedated Coop for the echo on Monday, he would ask for UPMC's pictures and evaluate them.

We asked if we would be able to meet with Dr. Gus and we were told that he did not have clinicals today. But about halfway through our appointment, Dr. Einzig said that he had called Dr. Gus to let him know we were at the clinic and Dr. Gus was going to come in and meet with us.

We met with Dr. Gus and he was straight forward, as everyone said he'd be, honest and down to earth. We asked about surgery, recovery, what defines success and limitations Coop may have to live with for his life.

Surgery would depend on the pictures received from UPMC. If they were clear, we will talk with his PA next week and schedule surgery, which would more than likely take place in two to three weeks. If the pictures are not clear, Dr. Gus will schedule an MRI for next week, and surgery will take place in two to four weeks.

My biggest concern was not necessarily surgery. Although it is a major surgery, I trust in Dr. Gus and his team. We've heard he is extremely particular with whom he works with and he has been performing this surgery for more than 30 years - he said he's performed more than 300. My fear was the recovery and potential complications.

When we met with Dr. Einzig at WVU last week, he made it seem as if surgery would be performed through the ribs without having to break them. At UPMC, Dr. Kreutzer said that regardless of the surgery entrance - ribs or chest - bones would have to be broken.

My first sense of relief came today in talking with Dr. Gus. He said that while there is a chance that a rib could be broken, he will not perform surgery with the intent of breaking them. Children's ribs are not yet completely formed. The ribs are pliable and he should be able to bend them to perform the surgery.

When discussing recovery, Dr. Gus said that Coop will probably spend about a week in the hospital. If all goes well, he could be fully recovered in four to eight weeks. Pam and I were worried, if bones had to be broken, about everyday things - crawling, changing diapers, rolling over in his crib, riding home from the hospital. Hopefully, his ribs will not have to be broken and Coop will be left with a little soreness.

As far as success, that will depend on a few things. The surgery is done to relieve high blood pressure. Success won't be known until we see if Coop is on high blood pressure medicine at the age of 20. The other determinant would be is if another surgery has to be performed later in life on the aorta. We were given no reason to think that surgery wouldn't have short-term success.

So now we wait. We wait for a phone call next week by Dr. Gus's PA to let us know if we are scheduling an MRI or surgery. Both Pam and I, while struggling with fact that our 8-month-old has to go through this, are confident in Dr. Gus, his team and the staff at WVU. We are confident in his recovery and confident it will be a success.

Our confidence is also in our God. While it may instinct to blame or question God, - we both have - it is in our faith that we know Cooper will make it through this. This is the condition that you hear high school athletes collapsing from and dying. Needless to say we feel blessed that our pediatrician identified the murmur and Cooper will get it fixed.

In closing, Pam and I also take comfort in a few other things. As an 8-month-old, Coop will not remember any pain associated with his surgery. He also has no idea what is in front of him which won't lead to a few weeks of sleepless nights and nightmares. Finally, babies will recover quicker than children or adults so Cooper will be back to himself in no time.

We appreciate any thoughts and prayers. We believe not only in prayer, but in directed, specific prayer.