Yesterday marked the 2 month count down until my official due date of January 14, 2011. I can't believe it's already mid-November and Stephen will be here before we know it!!! It felt like the 2nd trimester took forever, but the past four weeks have flown by. And boy has he grown. He continues to move around a lot in the late evenings and unfortunately, his little fit have been wedged in my right rib cage for the past two months it seems. Sleeping has definitely been a challenge (especially when Mabel insists on wedging herself between Bill and I) the past couple of weeks as well, but I'm figuring out little ways to wedge pillows under my belly to help alleviate some of the discomfort at night. And since he's pretty much balled up completely on my right side, that's the side where he tries to punch his arms and legs out.
It's also really hard to believe that tomorrow will be four weeks to the day since we got the news about Stephen's kidneys. In those four short weeks, we've visited over 8 physicians and three different hospitals (not including Fairfax) in three different States. I can't even begin to count the number of phone calls with physicians and nurses over those four weeks. There have been so many calls that we actually had to increase our cell phone plan minutes! But things are definitely settling down and we're getting back into our regular routines as much as possible. Although next week's Holiday is going to be a very welcome break from the daily grind!!!
Monday, November 15, 2010
Saturday, November 13, 2010
Fairfax Pediatric Specialty - Nephrology
Thursday was our much anticipated appointment with Dr. Robert Fildes at INOVA Pediatric Specialty. Dr. Fildes is a pediatric nephrologist who has his office in the same group as our pediatric geneticists, Dr. Lewanda. He is not located in the hospital itself, so we did not get to meet with any other doctors or staff that day or see any of the facilities at Fairfax Hospital, but Dr. Fildes came highly recommended from several sources, so we were extremely anxious and excited to meet with him.
To give you a little back-story, when I initially started my research for a pediatric nephrologist, I found Dr. Fildes name on the Internet. I simply called his office and made an appointment for Nov. 10th. A few days later, Dr. Fildes name came up when we met with Dr. Lewanda. She was able to actually get our appointment moved up to Nov. 3rd. Later that week, we got the call about CHOP and they wanted to see us on Nov. 3rd. So I had to cancel Dr. Fildes appointment. The next appointment they had available wasn't until Nov. 30th! We took it because what other choice did we have?
Later that week during out meeting with Dr. Kher from Children's National, he suggested we meet with Dr. Fildes and deliver at Fairfax and that it was critical to find a high risk OB/GYN at Fairfax ASAP. But we weren't getting in with any doctor's at Fairfax until the very end of the month! So what does any sane, normal mom-to-be do you ask??? I walked over to Dr. Fildes office, pleaded our case to his nurse, and begged. Luckily it worked (after explaining the whole situation and that I could potentially go into labor at any time since I don't have any amniotic fluid) and they got us in for an appoinment on Nov. 11th, this past Thursday. In the meantime, we must have heard Dr. Fildes name mentioned a handful of times...from friends, aquaintences, and other physicians.
All in all, the appointment with Dr. Fildes was awesome. He was honest with us, but compassionate to our case, and it was clear that he could handle all the kidney issues Stephen would encounter in his life; from birth through dialysis and surgery, to transplant. He typically sees about 15 new patients (babies and children) a year with ARPKD, with varying degrees. But he was very honest about the lung and heart problems and that while he was clearly knowledgeable on the issues and the types of help that Stephen will need for his lungs at birth, he was not the expert we needed to talk with regarding whether or not Fairfax would be a good place to be with all of Stephen's conditions. Our discussion focused somewhat on a machine called ECMO; extracorporeal membrane oxygenation. ECMO machines are only used at the most advanced NICUs in the country and Dr. Fildes wasn't 100% sure if Fairfax has ECMO machines that could be used on infants. Fairfax has ECMO, but they are mostly used in the PICU (pediatric intensive care unit) and not the NICU.
Basically, ECMO is an machine that acts as an artificial heart and lungs. It's an extremely invasive procedure that removes from the blood from the baby's heart, oxygenates the blood, and replaces it. It removes carbon dioxide and replaces oxygen. Because it's so invasive, it is only used, a very last effort to save a baby and can have not so favorable outcomes.
So with the help of Dr. Fildes, the neonatologists, and perinatologists at the hospital, we would need to decide if ECMO is something we want to even include in Stephen's course of treatment after birth and find out from the doctor's about whether or not they think Fairfax is a good "fit" for us. Dr. Fildes has agreed to be our team quarterback and is taking the lead on assembling a team at Fairfax. The other doctor's we are hoping to meet with include Dr. Khoury, the perinatologist or MFM, and Dr. Robin Baker, the head of neonatology at Fairfax Hospital.
I heard from Dr. Fildes on Friday (how great is that?!?!), and we are anticipating to meet with Dr. Baker next week and hopefully Dr. Khoury by the beginning of the following week. Our goal is to still know where we will deliver by Thanksgiving. And as much as we loved CHOP and we know 110% they have the capability of dealing with all of Stephen's issues, we also know that staying close to home will have other advantages that CHOP can't offer. But as soon as we make our decision, you all will be among the first to know!!!
To give you a little back-story, when I initially started my research for a pediatric nephrologist, I found Dr. Fildes name on the Internet. I simply called his office and made an appointment for Nov. 10th. A few days later, Dr. Fildes name came up when we met with Dr. Lewanda. She was able to actually get our appointment moved up to Nov. 3rd. Later that week, we got the call about CHOP and they wanted to see us on Nov. 3rd. So I had to cancel Dr. Fildes appointment. The next appointment they had available wasn't until Nov. 30th! We took it because what other choice did we have?
Later that week during out meeting with Dr. Kher from Children's National, he suggested we meet with Dr. Fildes and deliver at Fairfax and that it was critical to find a high risk OB/GYN at Fairfax ASAP. But we weren't getting in with any doctor's at Fairfax until the very end of the month! So what does any sane, normal mom-to-be do you ask??? I walked over to Dr. Fildes office, pleaded our case to his nurse, and begged. Luckily it worked (after explaining the whole situation and that I could potentially go into labor at any time since I don't have any amniotic fluid) and they got us in for an appoinment on Nov. 11th, this past Thursday. In the meantime, we must have heard Dr. Fildes name mentioned a handful of times...from friends, aquaintences, and other physicians.
All in all, the appointment with Dr. Fildes was awesome. He was honest with us, but compassionate to our case, and it was clear that he could handle all the kidney issues Stephen would encounter in his life; from birth through dialysis and surgery, to transplant. He typically sees about 15 new patients (babies and children) a year with ARPKD, with varying degrees. But he was very honest about the lung and heart problems and that while he was clearly knowledgeable on the issues and the types of help that Stephen will need for his lungs at birth, he was not the expert we needed to talk with regarding whether or not Fairfax would be a good place to be with all of Stephen's conditions. Our discussion focused somewhat on a machine called ECMO; extracorporeal membrane oxygenation. ECMO machines are only used at the most advanced NICUs in the country and Dr. Fildes wasn't 100% sure if Fairfax has ECMO machines that could be used on infants. Fairfax has ECMO, but they are mostly used in the PICU (pediatric intensive care unit) and not the NICU.
Basically, ECMO is an machine that acts as an artificial heart and lungs. It's an extremely invasive procedure that removes from the blood from the baby's heart, oxygenates the blood, and replaces it. It removes carbon dioxide and replaces oxygen. Because it's so invasive, it is only used, a very last effort to save a baby and can have not so favorable outcomes.
So with the help of Dr. Fildes, the neonatologists, and perinatologists at the hospital, we would need to decide if ECMO is something we want to even include in Stephen's course of treatment after birth and find out from the doctor's about whether or not they think Fairfax is a good "fit" for us. Dr. Fildes has agreed to be our team quarterback and is taking the lead on assembling a team at Fairfax. The other doctor's we are hoping to meet with include Dr. Khoury, the perinatologist or MFM, and Dr. Robin Baker, the head of neonatology at Fairfax Hospital.
I heard from Dr. Fildes on Friday (how great is that?!?!), and we are anticipating to meet with Dr. Baker next week and hopefully Dr. Khoury by the beginning of the following week. Our goal is to still know where we will deliver by Thanksgiving. And as much as we loved CHOP and we know 110% they have the capability of dealing with all of Stephen's issues, we also know that staying close to home will have other advantages that CHOP can't offer. But as soon as we make our decision, you all will be among the first to know!!!
Thursday, November 11, 2010
Happy Veteran's Day
Just wanted to express our thanks and admiration for all of our veterans, for the men and women and their families who have given the ultimate sacrifice for their country, and for those who are currently serving in the Armed Forces. We salute each and every one of you!
And a special remembrance for my grandfather's, Willard J. Noll and Warren H. Bitner and Bill's grandfather, William Speed who all served our country during WWII. Seven years ago I was lucky enough to witness my grandfather, Willard Noll, receive a Bronze Star on Veteran's Day for his bravery while fighting in the Pacific. It was a really cool thing to witness!!
So thank you Veterans! You are our Nation's true heroes!!!
And a special remembrance for my grandfather's, Willard J. Noll and Warren H. Bitner and Bill's grandfather, William Speed who all served our country during WWII. Seven years ago I was lucky enough to witness my grandfather, Willard Noll, receive a Bronze Star on Veteran's Day for his bravery while fighting in the Pacific. It was a really cool thing to witness!!
So thank you Veterans! You are our Nation's true heroes!!!
Tuesday, November 9, 2010
Inspirational Story
I think I might have mentioned this before, but I'm a HUGE Oprah fan. Billy would call it an obsession, but I wouldn't go that far. I get to catch-up on my TiVo'd episodes over the weekend when Billy's either golfing or at work, and Saturday was no exception. One of the shows from October was titled something like "One Family's Tragedy Becomes a Miracle" or something similar to that. I knew I probably shouldn't watch it because some part of the story was going to be really sad and I would inevitably end up in tears; but I just couldn't help myself.
The episode was about the Coble's, a family of 5 from California - Mom, Dad, and three children, one boy and two girls all under the age of 6. Driving home from an outing with her children, the Mom was hit from behind by a tractor trailer at full speed. Two of the children were taken to one hospital, the other child to another hospital and the Mother to another hospital. Dad was at work that day. And the unthinkable happened. All three children died.
Yes, the story is incredibly sad and tragic and horrible and every other emotion you can imagine. But the show and the story focused on how the couple was able to bond together and try to put the pieces of their shattered life back together. I know this sounds so stupid, but watching that show, I felt like they were speaking directly to me. And that maybe God had a hand in making sure I watched that show. I can in no way relate to the pain they have been through, but I can relate to their feeling of sadness, loneliness, and confusion. And how important it is that Billy and I are in this together and work to stay that way so that we also don't become a statistic. They talked candidly on the show about counseling and sharing their grief in different ways. Exactly the same things that we've been through.
Now to share the miracle and happy part of the story! Three months after the accident, the couple decided they wanted to have more children. They had to go through fertility treatments to do so, but were blessed with not one, not two, but three babies! TRIPLETS!! One boy and two girls! Amazing how God works in mysterious ways!
You can read more about the Coble's Tragedy and Miracle here: http://www.oprah.com/oprahshow/Coble-Family-Miracle/1
For me, the Coble's are definitely an inspiration and I hope that I can find a way to share with them how much their story meant to me.
The episode was about the Coble's, a family of 5 from California - Mom, Dad, and three children, one boy and two girls all under the age of 6. Driving home from an outing with her children, the Mom was hit from behind by a tractor trailer at full speed. Two of the children were taken to one hospital, the other child to another hospital and the Mother to another hospital. Dad was at work that day. And the unthinkable happened. All three children died.
Yes, the story is incredibly sad and tragic and horrible and every other emotion you can imagine. But the show and the story focused on how the couple was able to bond together and try to put the pieces of their shattered life back together. I know this sounds so stupid, but watching that show, I felt like they were speaking directly to me. And that maybe God had a hand in making sure I watched that show. I can in no way relate to the pain they have been through, but I can relate to their feeling of sadness, loneliness, and confusion. And how important it is that Billy and I are in this together and work to stay that way so that we also don't become a statistic. They talked candidly on the show about counseling and sharing their grief in different ways. Exactly the same things that we've been through.
Now to share the miracle and happy part of the story! Three months after the accident, the couple decided they wanted to have more children. They had to go through fertility treatments to do so, but were blessed with not one, not two, but three babies! TRIPLETS!! One boy and two girls! Amazing how God works in mysterious ways!
You can read more about the Coble's Tragedy and Miracle here: http://www.oprah.com/oprahshow/Coble-Family-Miracle/1
For me, the Coble's are definitely an inspiration and I hope that I can find a way to share with them how much their story meant to me.
Monday, November 8, 2010
SDU: Special Delivery Unit
What I didn't mention in my earlier posts about CHOP was that we actually got a tour of the SDU while we were there! Which was sooooo cool!!! After we found out about Stephen's diagnosis, we canceled our "baby class" at the hospital where you get a tour of the labor and delivery wing of the hospital. So we had yet to actually see what's goes on behind closed doors when the contractions begin.
Needless to say, we were BLOWN away by CHOPs SDU (how do you like those acronyms?!)!!
Little did we know at the time, but CHOPs SDU is actually the first of it's kind in the nation. You can read a little bit more about it here if you'd like:
http://www.chop.edu/news/chop-brings-hope-to-special-babies.html
and here: http://www.chop.edu/service/fetal-diagnosis-and-treatment/about-our-services/special-delivery-unit.html
It's an 8 bed labor, delivery, and recovery area located within the Center for Fetal Diagnosis and Treatment. The first two rooms they showed us were their "small" rooms that they don't really like to use. But let me tell you, those two rooms were larger than any hospital room I've ever seen! And all 8 rooms are private and include a full size pull out bed for Bill plus a comfy glider for me (and private bath with shower..pretty standard stuff). The rooms are meant to be a place for labor, delivery and recovery, so you never have to be moved around. And get this....friends and family are welcome 24 hours a day, 7 days a week. That's unheard of in a hospital!
But the best part about the SDU is how they handle the babies once they are born. If I'm able to have a vaginal delivery in a regular room, Stephen will be checked out and weighed right away in my room and then immediately handed off to a team of neonatologists and doctors who will be waiting in the room next door. But what's so cool, is that the rooms are separated by a frosted window. Just like the windows in your house. So the doctor's won't be interfering with the labor and delivery, but will be able to perform their miracles and do what they need to do just a short distance away without us having to see and/or hear what's going on. It will make it easy on Bill since he'll be able to really check on me and Stephen at the same time (and still take pictures of him being weighted and cleaned up), but still be separated from the things we don't want to see. But in case things don't go so well, he'll be right next door to us. I think it's totally genius!
And then once Stephen is stabilized, they'll bring him back in my room to spend some time with us before he's taken downstairs to the NICU.
Of course if I have a C-section, things will be a little bit different, but the operating room is located right outside of the SDU, so all three of us will still be close.
Plus the Unit is staffed with midwives, nurses, lactation consultants, and doctors to help us through every step. I think we'll need a lot of that since we have no idea what we're doing!! At this point, I think we'll just figure it out as we go.
Happy Monday!
XOXO
Lindsey
Needless to say, we were BLOWN away by CHOPs SDU (how do you like those acronyms?!)!!
Little did we know at the time, but CHOPs SDU is actually the first of it's kind in the nation. You can read a little bit more about it here if you'd like:
http://www.chop.edu/news/chop-brings-hope-to-special-babies.html
and here: http://www.chop.edu/service/fetal-diagnosis-and-treatment/about-our-services/special-delivery-unit.html
It's an 8 bed labor, delivery, and recovery area located within the Center for Fetal Diagnosis and Treatment. The first two rooms they showed us were their "small" rooms that they don't really like to use. But let me tell you, those two rooms were larger than any hospital room I've ever seen! And all 8 rooms are private and include a full size pull out bed for Bill plus a comfy glider for me (and private bath with shower..pretty standard stuff). The rooms are meant to be a place for labor, delivery and recovery, so you never have to be moved around. And get this....friends and family are welcome 24 hours a day, 7 days a week. That's unheard of in a hospital!
But the best part about the SDU is how they handle the babies once they are born. If I'm able to have a vaginal delivery in a regular room, Stephen will be checked out and weighed right away in my room and then immediately handed off to a team of neonatologists and doctors who will be waiting in the room next door. But what's so cool, is that the rooms are separated by a frosted window. Just like the windows in your house. So the doctor's won't be interfering with the labor and delivery, but will be able to perform their miracles and do what they need to do just a short distance away without us having to see and/or hear what's going on. It will make it easy on Bill since he'll be able to really check on me and Stephen at the same time (and still take pictures of him being weighted and cleaned up), but still be separated from the things we don't want to see. But in case things don't go so well, he'll be right next door to us. I think it's totally genius!
And then once Stephen is stabilized, they'll bring him back in my room to spend some time with us before he's taken downstairs to the NICU.
Of course if I have a C-section, things will be a little bit different, but the operating room is located right outside of the SDU, so all three of us will still be close.
Plus the Unit is staffed with midwives, nurses, lactation consultants, and doctors to help us through every step. I think we'll need a lot of that since we have no idea what we're doing!! At this point, I think we'll just figure it out as we go.
Happy Monday!
XOXO
Lindsey
Sunday, November 7, 2010
Hope Lives Here, Part 2
The second part of our day at CHOP was meeting with doctors for consultations. Our schedule indicated that we were to have a consult with an MFM - maternal fetal medicine doctor, and then with Dr. Bernard Kaplan, the pediatric nephrologist, but we actually ended up meeting with both at the same time and with the geneticist. Dr. Julie Moldenhauer, the MFM began speaking with us first about Stephen's lungs and heart. Most of what she told us we had heard from the other two MFMs, but she also told us some new information about his heart. The ECHMO revealed that there is a some fluid now around his heart. It's likely caused by the space issues in his chest and abdomen. Because the kidneys are taking up so much room, it's pushing the diaphragm up and causing some fluid to gather around the heart. And Dr. Moldenhauer explained to us that in normal babies, you should be able to fit 5 hearts in the chest cavity. In Stephen's case, you would only be able to fit 2-3 hearts. This is another function of the compression of the chest cavity. But the good news with the heart is that it is functioning exactly as it should. The four champers, valves, and arteries are all working great.
The other "new" news we heard from Dr. Moldenhauer was about Stephen's limbs being constricted. I think I might have described before that without amniotic fluid, Stephen is kind of shrink-wrapped by the placenta. That is what is constricting some of his chest growth. And because he's "shrink-wrapped by the placenta, he's really tucked in there very tight and his movements are more sharp and it's not as easy for him to move his arms and legs. Because of that, he might require some extra attention once he's born. Hopefully that will only be physical therapy, but it could be surgery.
As Dr. Mondenhauer was explaining some of these things to us, Dr. Kaplan came in and the conversation turned to focus on his piece of the puzzle. Dr. Kaplan knew that we had already met with a nephrologist, so he seemed a bit skeptical as to why we were at CHOP. Which at first set me on edge on a little. His first questions to us where: 1) what did the nephrologist already tell us/what do we already know, 2) why were we there, 3) what were our occupations, 4) what were our ages, and 5) do we have other children. All are fair questions, but right off the bat, I got a little worried. Basically we told Dr. Kaplan that while we had gotten great information from Dr. Kher from Children's National, we were still looking for a place that would give us comprehensive care for both myself and Stephen and that had seen cases similar and patients similar to us. After that Dr. Kaplan seemed to relax his questioning a bit and told us about all sorts of different families and children he had treated over the years. All were successful stories except for one.
So our conversation continued about dialysis, transplants, quality of life, and what would happen in the NICU. And by the end of our conversation, I think all 5 of us were on the same page. We know that the road could long and bumpy through the NICU, dialysis, and transplantation, but we also know don't know what will happen. Dr. Kaplan talking about different cases were he swore the baby would need dialysis right away and then in the end didn't even need dialysis. It was so great meeting with doctors who told us honestly they didn't know what would happen after Stephen was born, but no matter what happened, the team of doctor's could handle it and would make decisions based on what Bill and I wanted and what we thought was best for our baby in that moment.
We also chatted briefly about our choice to either relocate and deliver at CHOP or to stay here at home. The decision is definitely a really tough one. It will be hard for us to be away from home for so long; both emotionally and financially, but we are 110% sure that CHOP will give Stephen and I the best care. They do have social workers that will work with us to help set us up either at the Ronald McDonald house or in an apartment near by. And its not only hard for Bill and I, but it's also a burden on our families. So we are going to try our best to keep our thoughts about CHOP in the back of our minds when we go to Fairfax this coming week to meet with a pediatric nephrologist. We know that if Fairfax can offer us the same level of care and have dealt with cases like ours in the past, then we should choose Fairfax over CHOP, so that we have the comfort of home and our dog, and family and friends nearby.
But CHOP is going to be hard to beat!!! It was an amazing place and I can totally understand why they have chosen the slogan, "Hope Lives Here." Each and every person we came across that day was friendly, supportive, and exuded the confidence (in a good way) that they can help us and give Stephen the best chance at survival. And that's all Bill and I have been looking for.
Our goal is that by Thanksgiving, we will have made the decision where to deliver. If we decide on CHOP, I'll go every two weeks for a check-up with the high-risk OB/GYNs, we'll get a tour of the dialysis unit to have a better understanding of what it all entails, meet with the neonatologists, and then we would move to Philadelphia around Christmas to wait out Stephen's arrival. It sounds like a lot, but we're excited CHOP turned out to be everything we had hoped it would be!
XOXO
Lindsey
The other "new" news we heard from Dr. Moldenhauer was about Stephen's limbs being constricted. I think I might have described before that without amniotic fluid, Stephen is kind of shrink-wrapped by the placenta. That is what is constricting some of his chest growth. And because he's "shrink-wrapped by the placenta, he's really tucked in there very tight and his movements are more sharp and it's not as easy for him to move his arms and legs. Because of that, he might require some extra attention once he's born. Hopefully that will only be physical therapy, but it could be surgery.
As Dr. Mondenhauer was explaining some of these things to us, Dr. Kaplan came in and the conversation turned to focus on his piece of the puzzle. Dr. Kaplan knew that we had already met with a nephrologist, so he seemed a bit skeptical as to why we were at CHOP. Which at first set me on edge on a little. His first questions to us where: 1) what did the nephrologist already tell us/what do we already know, 2) why were we there, 3) what were our occupations, 4) what were our ages, and 5) do we have other children. All are fair questions, but right off the bat, I got a little worried. Basically we told Dr. Kaplan that while we had gotten great information from Dr. Kher from Children's National, we were still looking for a place that would give us comprehensive care for both myself and Stephen and that had seen cases similar and patients similar to us. After that Dr. Kaplan seemed to relax his questioning a bit and told us about all sorts of different families and children he had treated over the years. All were successful stories except for one.
So our conversation continued about dialysis, transplants, quality of life, and what would happen in the NICU. And by the end of our conversation, I think all 5 of us were on the same page. We know that the road could long and bumpy through the NICU, dialysis, and transplantation, but we also know don't know what will happen. Dr. Kaplan talking about different cases were he swore the baby would need dialysis right away and then in the end didn't even need dialysis. It was so great meeting with doctors who told us honestly they didn't know what would happen after Stephen was born, but no matter what happened, the team of doctor's could handle it and would make decisions based on what Bill and I wanted and what we thought was best for our baby in that moment.
We also chatted briefly about our choice to either relocate and deliver at CHOP or to stay here at home. The decision is definitely a really tough one. It will be hard for us to be away from home for so long; both emotionally and financially, but we are 110% sure that CHOP will give Stephen and I the best care. They do have social workers that will work with us to help set us up either at the Ronald McDonald house or in an apartment near by. And its not only hard for Bill and I, but it's also a burden on our families. So we are going to try our best to keep our thoughts about CHOP in the back of our minds when we go to Fairfax this coming week to meet with a pediatric nephrologist. We know that if Fairfax can offer us the same level of care and have dealt with cases like ours in the past, then we should choose Fairfax over CHOP, so that we have the comfort of home and our dog, and family and friends nearby.
But CHOP is going to be hard to beat!!! It was an amazing place and I can totally understand why they have chosen the slogan, "Hope Lives Here." Each and every person we came across that day was friendly, supportive, and exuded the confidence (in a good way) that they can help us and give Stephen the best chance at survival. And that's all Bill and I have been looking for.
Our goal is that by Thanksgiving, we will have made the decision where to deliver. If we decide on CHOP, I'll go every two weeks for a check-up with the high-risk OB/GYNs, we'll get a tour of the dialysis unit to have a better understanding of what it all entails, meet with the neonatologists, and then we would move to Philadelphia around Christmas to wait out Stephen's arrival. It sounds like a lot, but we're excited CHOP turned out to be everything we had hoped it would be!
XOXO
Lindsey
Thursday, November 4, 2010
Hope Lives Here, Part I
Well as you all know, we were up in Philadelphia yesterday at Children's Hospital of Philadelphia (CHOP). Our day started at 7 AM at the hospital so we drove up Tuesday night after work and stayed in Philly for the night. On our way through the city to the hotel, we noticed that the light poles around City Hall had banners that read, "Hope Lives Here. Children's Hospital of Philadelphia" and we even saw a billboard on the way into the city with the same slogan. When I saw that billboard and the banners, I just knew that we were going to have a good day at CHOP. I only wish I had gotten a picture of one of those banners.
The day was an extremely long one, so I think I'll break it down into two parts so I don't bore you to death! Part I - the tests and Part II - the consult.
Part I
Like I mentioned before, the day started bright and early at 7 AM. CHOP is located on Penn's campus and is surrounded by other medical facilities and hospitals. It's definitely where you want to be if something goes wrong health-wise! And at 7 AM when we pulled in, the place was already buzzing. We were told to go to the Wood Center at CHOP, 5th floor to the Special Delivery Unit (SDU). We soon found out, that SDU would be our homebase for the day. Every single person we came in contact with at CHOP from the registration lady to the doctors, were so nice. We checked in, filled out some lengthy paperwork (were even offered breakfast!), and then met briefly with our "quarterback" Stefanie, the genetic counselor. Stefanie already had a whole binder specific to our case with our records and everything and was up-to-date on everything we had been told and been through. She gave us our schedule for the day and explained what each appointment would be. Our schedule was as follows:
From there we went down the hall for the ECHO ultrasound. What was so cool about the ECHO ultrasound was that the doctor's were watching the monitors from across the hall in another room, so the results were instant. And if they needed to see anything else, that could be done too. This one was pretty boring to watch because we had no idea what we were looking at and I actually snoozed a little while the radiologist did her thing on my belly. The ECHO was about an hour.
Then we went back to meet with Stefanie to chat some more about our family health history and then it was off for my MRI. By this time it was about noon. I had had an MRI before, so I basically knew what to expect, but it was strange being in the MRI machine pregnant. Between the vibrations of the machine and the loud pounding (and maybe the sugary fruit snacks I had...I got a little lecture from the MRI tech lady about how bad fruit snacks are for you, but a pregnant lady has got to eat!!), Stephen went absolutely nuts during the MRI!!! It felt like he was going to jump right out of my skin. Between him moving like crazy and having already been laying on my back for hours that morning, it was a tough 45 minutes in that machine aka "the coffin." But we got through it unscathed. The basic jist of the MRI was to get some good images of Stephen's chest cavity. I think I was probably their biggest and easiest patient of the day though. They don't usually see adults, since it's a pediatric hospital. And the poor little kiddies have to be sedated most of the time because it's so scary for them.
Poor Billy, during all of this he had to just sit there and watch. I can only imagine how tired and uncomfortable he must have been throughout all of those tests. But he was a real trooper!! At least I was able to lie down and actually close my eyes a bit even though I was being rolled back and forth and back and forth during all the ultrasounds.
After the MRI (it was now 1pm), we took a 30 minute break for lunch in the cafeteria and then it was back to the SDU for our consults. More on that later!! I like to keep you in suspense! :)
The day was an extremely long one, so I think I'll break it down into two parts so I don't bore you to death! Part I - the tests and Part II - the consult.
Part I
Like I mentioned before, the day started bright and early at 7 AM. CHOP is located on Penn's campus and is surrounded by other medical facilities and hospitals. It's definitely where you want to be if something goes wrong health-wise! And at 7 AM when we pulled in, the place was already buzzing. We were told to go to the Wood Center at CHOP, 5th floor to the Special Delivery Unit (SDU). We soon found out, that SDU would be our homebase for the day. Every single person we came in contact with at CHOP from the registration lady to the doctors, were so nice. We checked in, filled out some lengthy paperwork (were even offered breakfast!), and then met briefly with our "quarterback" Stefanie, the genetic counselor. Stefanie already had a whole binder specific to our case with our records and everything and was up-to-date on everything we had been told and been through. She gave us our schedule for the day and explained what each appointment would be. Our schedule was as follows:
- 7:45 AM - Ultrasound
- 9:45 AM - Genetic Counselor
- 10:00 AM - ECHO (ultrasound of Stephen's heart)
- 11:00 AM - Insurance/Billing Consult
- 11:30 AM - MRI
- 1:30 PM - OB/MFM Consult
- 3:00 PM - Nephrology Consult
From there we went down the hall for the ECHO ultrasound. What was so cool about the ECHO ultrasound was that the doctor's were watching the monitors from across the hall in another room, so the results were instant. And if they needed to see anything else, that could be done too. This one was pretty boring to watch because we had no idea what we were looking at and I actually snoozed a little while the radiologist did her thing on my belly. The ECHO was about an hour.
Then we went back to meet with Stefanie to chat some more about our family health history and then it was off for my MRI. By this time it was about noon. I had had an MRI before, so I basically knew what to expect, but it was strange being in the MRI machine pregnant. Between the vibrations of the machine and the loud pounding (and maybe the sugary fruit snacks I had...I got a little lecture from the MRI tech lady about how bad fruit snacks are for you, but a pregnant lady has got to eat!!), Stephen went absolutely nuts during the MRI!!! It felt like he was going to jump right out of my skin. Between him moving like crazy and having already been laying on my back for hours that morning, it was a tough 45 minutes in that machine aka "the coffin." But we got through it unscathed. The basic jist of the MRI was to get some good images of Stephen's chest cavity. I think I was probably their biggest and easiest patient of the day though. They don't usually see adults, since it's a pediatric hospital. And the poor little kiddies have to be sedated most of the time because it's so scary for them.
Poor Billy, during all of this he had to just sit there and watch. I can only imagine how tired and uncomfortable he must have been throughout all of those tests. But he was a real trooper!! At least I was able to lie down and actually close my eyes a bit even though I was being rolled back and forth and back and forth during all the ultrasounds.
After the MRI (it was now 1pm), we took a 30 minute break for lunch in the cafeteria and then it was back to the SDU for our consults. More on that later!! I like to keep you in suspense! :)
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