So today is my husband's "golden birthday", he's turning 29 on the 29th. We actually discussed the irony of this a few days ago. Most people associate their golden birthday with luck, correct? Well my husband has always had a saying about luck and his life and although I may not get it word for word, I've heard it enough times to get it close. It goes something like this.."If you're looking for bad luck, then just look for me, because bad luck seems to follow me everywhere I go". Now of course, me being me, I've always had something to say about this. First, who really goes around looking for bad luck? Second, your luck isn't that bad, so hush. So of course when we began talking about this the other day and his famous saying came out once again, I didn't say any of it. I only said "I understand".
Yesterday was an interesting day to say the least. It started off extremely productive. Dr. Sanders' office called first thing in the morning and I feel like that phone call got a lot accomplished. His nurse arranged for us to have a second opinion with a Maternal Fetal Medicine doctor at Woman's Hospital in Baton Rouge. This was a concern we had expressed at our appointment on Tuesday. We do not expect the diagnosis to change, like Jason said "facts are facts". We are hoping to get more detailed answers and maybe even a plan of action. We also discussed having a meeting with the neonatologist. Up until now, we were only told that the NICU team would be in delivery. But going back to my semi-OCD ways, you know I need to hear more than just this. We want to meet the people who will have our son's life in their hands. We need to know what actions will be taken in each situation to make sure he is getting the best care. They need to know us and know what we want. So, within minutes, Dr. Sanders' nurse had an advocate from TGMC call us and she seemed amazing. She is setting up the appointment with Dr. Neavis and also informed us that they have already been prepped about our situation. She explained that at any time if we have questions, concerns, or need anything that we could call her directly. She was extremely sincere in everything she had to say. On top of all of this good news, I called one more doctor. Lindsey, a PKD mom I've been in contact with, suggested that we call the pediatric nephrologist at Children's Hospital in New Orleans. She made a good point by saying that Children's has a NICU, PICU, and transplant team. All things Parker will need if he can get through the first few days. So, I wasted no time. I called and spoke to a nurse and she is presenting our case to the doctor. We haven't heard back from the doctor, yet, but the nurse was optimistic in saying that they have taken cases like mine in the past.
As you can see we have hit the point of determination. We are going to do everything we can to make sure we have the best team of doctors.
Now on to the second half of yesterday. (It's not as good as the first half so don't get too excited!) I spent most of the afternoon in bed feeling absolutely miserable. Around 5 o'clock I finally took my temperature, low and behold 101 pops up on the screen. Well no wonder I feel like an 18 wheeler just hit me! So I take some Tylenol and try to go back to sleep. This proved to be difficult, though, since my phone doesn't stop ringing. Of course, I don't answer, though. (No offense to any of you who called, but you all know that I do not want to talk when I feel like that) I will leave out details to the rest of the day, but lets just say I did my praying to the porcelain gods all afternoon. I should be caught up on those for a while. Last night Jason came in around 7 or 8 and demanded that I eat. I can't blame him, he was worried about nutrients getting to Parker and for good reason. He was nice enough to make me soup and crackers with gatorade and even delivered it to me. He is wonderful!
I am happy to report that I am feeling much better this morning and will actually attempt hard food in just a minute. Dr. Sanders said that the stomach virus is going around pretty badly and that maybe I could have gotten that. He also said that with the things we've been through in the past week that stress could be taking it's toll on me. So we are monitoring things and if it gets bad again we will go in.
Thanks to everyone who has been praying! It seems like our story has spread pretty quickly. There are people that I have never even met who are approaching me with their thoughts and prayers. Please don't stop! We need every last one of them.
Parker's Fight Against ARPKD
Friday, July 29, 2011
Thursday, July 28, 2011
PKD awareness
While reading another PKD mom's blog I stumbled across this.
http://www.etsy.com/listing/55490983/pkd-awareness-single-kidney-pendant-in?ref=pr_shop
These necklaces are made in the shape of kidneys and are used to raise awareness of PKD. From each order $20 is donated directly to the PKD foundation. I've already ordered one and thought that some of you may be interested as well.
http://www.etsy.com/listing/55490983/pkd-awareness-single-kidney-pendant-in?ref=pr_shop
These necklaces are made in the shape of kidneys and are used to raise awareness of PKD. From each order $20 is donated directly to the PKD foundation. I've already ordered one and thought that some of you may be interested as well.
A whirlwind of emotions..
Last Friday, July 22, 2011, began as a normal day. We woke up so excited that we would get to see Parker for the first time in over 7 weeks. Our appointment was supposed to be routine; therefore, we expected to be in and out of the office pretty quickly. Boy were we wrong! Our appointment was scheduled for 9:00 a.m. and we were seeing the ultrasound tech first. I was extremely frustrated with her the entire time she was performing the ultrasound. She wasn't explaining anything at all and it seemed like she was moving through the whole thing pretty quickly and very quietly. She printed three lousy pictures for us and sent us out to the hall where we were supposed to wait for our room. I felt like just another number to her and maybe even an inconvenience. So you can only imagine that I wasn't happy. I looked at Jason and asked if she was serious and complained that the pictures were not very good and were hard to make out.
The nurse eventually came and got us and told us that our room was ready, but once again we were left in there waiting forever. Dr. Sanders finally came to see us at around 10:30 and explained that he had taken so long because he was on the phone with a specialist discussing my chart. He went on to say that my amniotic fluid was extremely low and that we would need to run a few tests. He started by checking to make sure I hadn't ruptured or began leaking. I hadn't. Then he said that my placenta looked fine and that Parker's growth was right on target, 3 pounds 14 oz. were his exact words. He ran a stress test (NST) and Parker passed with flying colors. We were taken back to ultrasound and he came with us. They measured the amniotic fluid once again and I was measuring 5.7cm- I had a 4 cm. pocket and three pockets that measured 1 cm. Dr. Sanders said that 5 cm was considered extremely low and that meant that I was borderline. He said he was sending us see the specialist in New Orleans that day. He mentioned that it could probably wait until Tuesday, but "better safe than sorry".
At this point, Jason and I are both thinking that a.) My membrane hasn't ruptured, that's awesome! b.) My placenta looks great c.) Parker's growth is right on target d.) He passed his stress test with flying colors e.) Although my fluid may be borderline, it's still above what they said. So whatever the problem is, it can't be so bad. Everything sounds like it is somewhat good so far, right? Wrong.
When we got to Ochsner, neither one of us could even imagine what we would be told. Dr. Robichaux and his ultrasound tech were much more accommodating. They explained each and every thing they did and even talked to us about other things in an attempt to distract us. It definitely beat the dead silence we received earlier that morning. When they were done performing the second ultrasound, Dr. Robichaux had the nurse escort us to a separate room where we could discuss what he saw, after he reviewed some things. Now there are two things that are about to happen that should have been clear signs for us that something was seriously wrong. First, before Dr. Robichaux entered the room again I could hear him taking deep breaths and whispering in the hall. (I suppose he was giving himself a pep talk for what he was about to tell us) Secondly, when he walked in he asked how far we had traveled and if we were there alone. The light bulb really should have gone off at this point.
The news that we received hit us like a brick wall and some of it is still a bit hazy. Parker has a genetic disease called Autosomal Recessive Polycystic Kidney Disease, or ARPKD. Apparently, Jason and I are both recessive carriers of this gene (which we did not know previously) and there was a 1 in 4 chance that we could pass this on to our children. If only one of us carried this recessive gene then I wouldn't be writing this blog as we speak. Parker would be unaffected, we would have never known he had the gene, and he would a normal, healthy baby. BUT since we both have the gene and we both passed it on to him, his prognosis is grim. For those of you who are like me and need a visual to completely understand....
His kidneys are about 8 times to big for him at the moment and they are filled with cysts. Because of the lack of amniotic fluid I have, his lungs have had a difficult time growing and they are severely underdeveloped. Through the fog of this conversation I believe the doctor stated his lungs were measuring at 5 months, instead of the 7 1/2 months that they should be. As if this is not enough, his kidneys have also affected his liver and that is swollen too. A lot to process at once, right?
So after being told all of this I went into a state of shock and my semi-OCD ways kicked in. As I fell into what I call my "zombie state of mind", I began asking a million questions. Although I do not remember some of the questions (or the answers) that he gave us, I do remember the important things. These OCD characteristics have continued for the past several days. I have spent many hours doing research, looking for doctors, and connecting with a group of women who have all been in our shoes. Some of them have stories filled with sorrow, but others share stories of success. Each and every one of them has been helpful and inspirational to us in some way and without them, I do not know where I would be.
What we know so far: 1) There is nothing that we can do differently between now and delivery (in 6-9 weeks) that will change anything. There will be many many many more doctor's appointments, but there are no procedures or tests that can change anything while he's still in utero. 2) Parker's chances of survival are extremely low, but miracle's do happen. (There are numerous families that we have been in contact with that are living proof of this.) 3) EVERYTHING will depend on his lungs and how developed they are. 4) If he does survive, then he will definitely need dialysis and also a kidney transplant. 5) The difficult part of this is that there are way too many unknowns and nothing can be definitively answered until the day of delivery.
As you can imagine, the last few days have been filled with every emotion possible. Anger, denial, depression, and even an ounce of acceptance has hit both of us. We appreciate all of the calls, texts, e-mails, and comments that our friends and family have left. If we have not answered or responded please know that it is nothing personal, but it's just because things are still overwhelming. Several people have asked if we mind being added to prayer lists or groups and quite frankly we say please do! We will take prayers from anyone of any denomination, no questions asked. We know that we have to leave this to God and with his guidance and strength we will make it through this.
The nurse eventually came and got us and told us that our room was ready, but once again we were left in there waiting forever. Dr. Sanders finally came to see us at around 10:30 and explained that he had taken so long because he was on the phone with a specialist discussing my chart. He went on to say that my amniotic fluid was extremely low and that we would need to run a few tests. He started by checking to make sure I hadn't ruptured or began leaking. I hadn't. Then he said that my placenta looked fine and that Parker's growth was right on target, 3 pounds 14 oz. were his exact words. He ran a stress test (NST) and Parker passed with flying colors. We were taken back to ultrasound and he came with us. They measured the amniotic fluid once again and I was measuring 5.7cm- I had a 4 cm. pocket and three pockets that measured 1 cm. Dr. Sanders said that 5 cm was considered extremely low and that meant that I was borderline. He said he was sending us see the specialist in New Orleans that day. He mentioned that it could probably wait until Tuesday, but "better safe than sorry".
At this point, Jason and I are both thinking that a.) My membrane hasn't ruptured, that's awesome! b.) My placenta looks great c.) Parker's growth is right on target d.) He passed his stress test with flying colors e.) Although my fluid may be borderline, it's still above what they said. So whatever the problem is, it can't be so bad. Everything sounds like it is somewhat good so far, right? Wrong.
When we got to Ochsner, neither one of us could even imagine what we would be told. Dr. Robichaux and his ultrasound tech were much more accommodating. They explained each and every thing they did and even talked to us about other things in an attempt to distract us. It definitely beat the dead silence we received earlier that morning. When they were done performing the second ultrasound, Dr. Robichaux had the nurse escort us to a separate room where we could discuss what he saw, after he reviewed some things. Now there are two things that are about to happen that should have been clear signs for us that something was seriously wrong. First, before Dr. Robichaux entered the room again I could hear him taking deep breaths and whispering in the hall. (I suppose he was giving himself a pep talk for what he was about to tell us) Secondly, when he walked in he asked how far we had traveled and if we were there alone. The light bulb really should have gone off at this point.
The news that we received hit us like a brick wall and some of it is still a bit hazy. Parker has a genetic disease called Autosomal Recessive Polycystic Kidney Disease, or ARPKD. Apparently, Jason and I are both recessive carriers of this gene (which we did not know previously) and there was a 1 in 4 chance that we could pass this on to our children. If only one of us carried this recessive gene then I wouldn't be writing this blog as we speak. Parker would be unaffected, we would have never known he had the gene, and he would a normal, healthy baby. BUT since we both have the gene and we both passed it on to him, his prognosis is grim. For those of you who are like me and need a visual to completely understand....
His kidneys are about 8 times to big for him at the moment and they are filled with cysts. Because of the lack of amniotic fluid I have, his lungs have had a difficult time growing and they are severely underdeveloped. Through the fog of this conversation I believe the doctor stated his lungs were measuring at 5 months, instead of the 7 1/2 months that they should be. As if this is not enough, his kidneys have also affected his liver and that is swollen too. A lot to process at once, right?
So after being told all of this I went into a state of shock and my semi-OCD ways kicked in. As I fell into what I call my "zombie state of mind", I began asking a million questions. Although I do not remember some of the questions (or the answers) that he gave us, I do remember the important things. These OCD characteristics have continued for the past several days. I have spent many hours doing research, looking for doctors, and connecting with a group of women who have all been in our shoes. Some of them have stories filled with sorrow, but others share stories of success. Each and every one of them has been helpful and inspirational to us in some way and without them, I do not know where I would be.
What we know so far: 1) There is nothing that we can do differently between now and delivery (in 6-9 weeks) that will change anything. There will be many many many more doctor's appointments, but there are no procedures or tests that can change anything while he's still in utero. 2) Parker's chances of survival are extremely low, but miracle's do happen. (There are numerous families that we have been in contact with that are living proof of this.) 3) EVERYTHING will depend on his lungs and how developed they are. 4) If he does survive, then he will definitely need dialysis and also a kidney transplant. 5) The difficult part of this is that there are way too many unknowns and nothing can be definitively answered until the day of delivery.
As you can imagine, the last few days have been filled with every emotion possible. Anger, denial, depression, and even an ounce of acceptance has hit both of us. We appreciate all of the calls, texts, e-mails, and comments that our friends and family have left. If we have not answered or responded please know that it is nothing personal, but it's just because things are still overwhelming. Several people have asked if we mind being added to prayer lists or groups and quite frankly we say please do! We will take prayers from anyone of any denomination, no questions asked. We know that we have to leave this to God and with his guidance and strength we will make it through this.
Subscribe to:
Posts (Atom)