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.
Tuesday, September 11, 2012
Tuesday, September 4, 2012
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.
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.
Monday, September 3, 2012
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.
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.
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