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.
Sunday, September 30, 2012
Monday, September 24, 2012
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'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.
 |
| Cooper appearing calm right after changing into his gown. |
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.
Sunday, September 23, 2012
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!
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!
Monday, September 17, 2012
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.
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.
Wednesday, September 12, 2012
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.
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.
Tuesday, September 11, 2012
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. . .
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.
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 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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