We made it safely to and from Augusta and learned a little in between. We started our day out with neurosurgery. We met Dr. Macomson who will actually do the surgery shortly after birth. He said that it usually takes place about 24 hours after birth so that they can give the baby adequate time to become stable. The surgery to place the shunt in lasts about an hour. He will have a small incision in his head to insert the tubing and drain and one small incision in his abdomen to make sure the tube is in place so it can drain. He said that on average a shunt lasts about 10 years but children tend to have more replacements because they are constantly growing or getting infected/blocked. There is a surgery that he could possibly have when he is older to create a larger opening so that the fluid can drain on its own. This could be a possibility when we have to have another surgery to replace the shunt. Dr. Macomson also told us that because of the surgery, Tripp would probably have to have some type of physical, occupational, and/or speech therapy because when surgery is done on the brain it can mess up the normal functions of the brain and our body. We asked about Tripp playing contact sports when he was older such as baseball and football. He said that if all goes well and the shunt begins to work properly draining the fluid so the brain can restore itself, that Tripp could lead a normal life and play anything that other kids his age were playing. Such a relief for John to hear!!
We also met with the charge nurse on the labor/delivery floor. She walked us through what would happen and who all would be in the room with us when Tripp was born. She took so much time explaining how things worked and what to expect with a c-section.
After Labor and delivery, we met with one of the neonatologists. He said that we should expect for Tripp to have to have a breathing tube when he is born because often times these babies can't breathe on their own because the brain tells you to breathe and his will not be able to. He said that this should last for 3-5 days. A little scary to think about but I know that he would be in great hands. He also said that at the most we should expect to stay 1 month but it could be a short as 1 week. Praying for a short stay and that we will come home with healthy baby! We also toured the NICU and got to see where Tripp would be staying.
The staff at MCG have been and will be so accommodating to our family. They welcome as many family members to be a part of the whole process. That's a good thing because John has HUGE family.
We met with Dr. Devoe at 1:00 that afternoon. He did another 3d ultrasound and took a second look at the spine, heart, and kidneys. Everything there looked great. The sonographer told us that if we didn't know already that Tripp had hydrocephalus, they would not be able to tell yet from the ultrasound because he looks so normal. She said that she has seen many babies that had disabilities that you could see on the ultrasound. Tripp's forehead is starting to protrude but she said it looks minimal. She made me feel better and said that we are very fortunate that we have only this to worry about. I go back to Augusta July 25 for my 30 week checkup and again at 34 weeks. At 34 weeks I will have another amniocentesis to determine if the fetal lung development is enough to go ahead and deliver around 36 or 37 weeks. Dr. Devoe said that at the 34 week appointment we would circle the date to take the baby. I think we are looking at having him right after labor day.
In the meantime, I am still taking the progesterone shots weekly at my house in addition to going to physical therapy for my back. I guess it's safe to say that I am SUPER busy and it doesn't look like it will be slowing down anytime soon.
John and I would like to say thank you to everyone that has prayed, called, emailed, sent cards, etc... It means so much to us to know that we have so many prayer warriors behind us. Thanks for all the support! Keep the prayers coming!!!
Love to all of you!!!
Wednesday, June 29, 2011
Wednesday, June 22, 2011
ITINERARY
You know it's going to be a long day of Dr. visits when you receive an itinerary in the mail with maps and diagrams of how to get from one appointment to another. On Sunday, we depart for yet another LONG road trip to Augusta. My sister Tiffany and mom are going with us. I think it will be beneficial for them to meet with the teams of doctors as well since they will be helping us care for Tripp when we return home following delivery. They will be our relief team when John and I just need a break or a couple of hours to get away. Our morning begins at 8:10 when we meet with Dr. Macomcon. He is an assistant professor of neurology and will be the Dr. in charge of Tripp's surgery shortly after birth. After we meet with him, we will be escorted to Neonatology to meet with the team of doctors and nurses that will care for him in the NICU/ICU nursery. Sometime after that appointment we are going to labor and delivery to meet with the doctors and nurses there that will be performing the c-section. Hopefully after that visit we will get to eat a bite for lunch! I don't know if there will be enough time!!! All this to be done before 1:00. At 1:00 we are meeting with the maternal fetal specialist, Dr. Devoe, that we met with last time. He will be taking care of me throughout the remainder of the pregnancy in addition to my regular OB. He is the one that I will have to travel to see every month until we get closer and then probably twice a month.
Please be in prayer that we have safety of travel to and from Augusta. Also pray for the Doctors that will be taking care of us throughout this "Tripp" or journey that we are on.
I will update when we actually meet with the doctors. This has been such a great way to vent and to just say the things that I needed to say. I still have days that are not so easy. Last night was a struggle for me. I just had to turn it over to God and fell asleep while talking to Him! I woke up this morning with a feeling of peace.
I think that we will actually get to tour the NICU/ICU and see others who are dealing with what we will soon be facing at birth. I am scared to "see" and "hear" what we may be facing. The social worker that is working with us said that it will be good to see what we should expect and even see what babies look like born with hydrocephalus. Just a little nervous and anxious I guess!
It's so awesome knowing that we have family and friends that are here to support us in any way and that are willing to take this "Tripp" along with us! Thank you from the bottom of our hearts for everything!!! <3
Trust & Rely In Power of Prayer!
Please be in prayer that we have safety of travel to and from Augusta. Also pray for the Doctors that will be taking care of us throughout this "Tripp" or journey that we are on.
I will update when we actually meet with the doctors. This has been such a great way to vent and to just say the things that I needed to say. I still have days that are not so easy. Last night was a struggle for me. I just had to turn it over to God and fell asleep while talking to Him! I woke up this morning with a feeling of peace.
I think that we will actually get to tour the NICU/ICU and see others who are dealing with what we will soon be facing at birth. I am scared to "see" and "hear" what we may be facing. The social worker that is working with us said that it will be good to see what we should expect and even see what babies look like born with hydrocephalus. Just a little nervous and anxious I guess!
It's so awesome knowing that we have family and friends that are here to support us in any way and that are willing to take this "Tripp" along with us! Thank you from the bottom of our hearts for everything!!! <3
Trust & Rely In Power of Prayer!
Monday, June 20, 2011
The next hurdle
Well as I sit here and think about what the road ahead may look like, I often come back to the haunting task or nightmare of finding someone to take care of Tripp when I have to return to work. Quitting my job and being a stay at home mom is absolutely out of the question. Financially I would not be able to do that with the unknowns of medical bills. Because of the unknowns as far as what specific care will be needed, it is hard for us to even begin to think about who would want this job. It can't be just anyone. It would have to be a lot of one on one attention and someone that could handle the possibility of a lot of extra TLC. Please be in prayer as we travel this road and that God places the right person in our path. I know this person is out there, we just have to find them. Better yet, have them find us!!!!
If you know of anyone around where we live that could be a possibility, please let me know.
If you know of anyone around where we live that could be a possibility, please let me know.
Saturday, June 18, 2011
T.R.I.P.P
My sister texted me last night with T.R.I.P.P.
Trust &
Rely
In
Power of
Prayer
We are learning that a little more each day!! Never in a million years did we ever picture ourselves sitting here with all of this going on around us. Thanks so much for the prayers and please keep them coming!
Love you guys!!!
Trust &
Rely
In
Power of
Prayer
We are learning that a little more each day!! Never in a million years did we ever picture ourselves sitting here with all of this going on around us. Thanks so much for the prayers and please keep them coming!
Love you guys!!!
Wednesday, June 15, 2011
Welcome to Holland
This is a poem that my friend Tammie shared with me and I thought I would share it with all of you!
I think this has been a lifesaver to us as far as dealing with the unknowns and uncertain road ahead.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I think this has been a lifesaver to us as far as dealing with the unknowns and uncertain road ahead.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Tuesday, June 14, 2011
From the beginning.....
Here is the story of our "Tripp" or journey that we have been on for the last 5 1/2 months....
I found out I was pregnant on January 24, 2011. I remember approaching John about it with an uneasy feeling. I was excited but had already figured out my due date and it was October 1. What's the big deal about that date most people would ask. Well, it's the day of the Florida-Alabama game and we have season tickets. All I could think about was "what is this going to do to our football season and traveling down for games?" Never did I imagine that this "Tripp" would take us in many other directions and that football season and not going to games would seem like the least of my problems.
Around week 6, I started to feel a little different and had a few issues but my dr. reassured me that what I was experiencing was completely normal and that every pregnancy is different. I started to feel better and grew a little more excited everyday about this baby that would join our family. We had our first OB appointment February 15 and got to see the heartbeat and our first picture to take home. Everything looked great and so we thought we were on the road for a normal, healthy pregnancy.
May 11 was the day that we had been awaiting for a long time. We took Kinsley with us to find out if she was going to have a baby sister or brother. As I was lying on the table, the dr. came in to help the sonographer read the ultrasound. He asked us if we wanted to know what we were having and he immediately said "it's definitely a boy, there is no denying it." I looked over at John and he was grinning from ear to ear. Then I heard "Whoa!" Hope, the sonographer, and the Dr. began to talk and look even more. I tried to motion for John to come over to me because I could not even get the words out of my mouth. I started to feel light headed, my ears started to ring, and I broke out into a cold sweat. I covered my eyes and could not look at the tv to even see the baby on there. John could not hear any of this and didn't know anything was going on. The dr. continued looking and asking Hope to go back to the brain to look. He finally spoke up and said that the lateral ventricles were enlarged and that he wanted to refer me to Dr. Edwards. Dr. Edwards is a specialist and I knew that this could mean the start of a long journey. He mentioned to us that the condition we were possibly facing was called hydrocephalus. He explained that he did not know much about this but that Dr. Edwards could do more extensive tests. I thought that I would have a couole of days to take this in while we waited for an appointment with Dr. Edwards. WRONG! When I checked out, they told me that Dr. Edwards would see me at 8:00 tomorrow morning.
The next morning, myself, John, and my sister Tiffany went to see Dr. Edwards to look at what we were possibly facing. After the sonographer took about 100 pictures, the dr. came in. He took a look and confirmed that the baby had Hydrocephalus and that it was possibly caused by aqueductal steniosis. He placed the baby in the moderate to severe category. He also suggested that we have an amniocentesis done to rule out other possible factors such as spina bifida, trisomy 13 or 18. He said that he felt like the spine was ok but was only 90% sure because he could not see the entire thing. Often times when there is hydrocephalus, there is also spina bifida. So again, there I go thinking that we can think about the amnio and have a day or two to sleep on since it came with the risk of miscarriage. WRONG again! He left us alone for about 5 minutes and came back to hear our decision. We agreed and within 5 minutes he was sticking that long needle into my abdomen. So scary! I then had to leave there and go have the RhoGam shot at my dr. because of my blood type. I was also told to go home and do much of nothing for the next 48 hours. So I did. BORING!!!
I know this post is long but I just want you guys to know the steps we have taken to get where we are now. We made a follow up appointment that same day to see Dr. Edwards again in 2 weeks and see of there was any change. On Monday May 23, Jill, Dr. Edwards nurse, called me to give me the results of the amnio. Aqueductal stenosis was the diagnosis and this was causing the hydrocephalus. We met with Dr. Edwards on Wednesday May 25 to take another look. The aquaducts were even more enlarged and measured 21 and 23 cm. He moved us into the severe range. Possibly the WORST day of my life. I knew we had so many peeple all over the country praying for us and I just felt like the prayers had not helped anything. I knew I needed them more than ever at that very moment but didn't know how much faith I had left. Dr. Edwards said that he wanted us to meet with Dr. B. Maria, a pediatric neurologist, from MCG. He travels from MCG to Albany once a month to see patients here and he would be able to see me June 9. I wasn't satisfied so I called to see if we could meet with him earlier if we traveled to Augusta. We finally got an appointment for June 1.
Myself, John and Tiffany headed out for our roadtrip to Augusta on May 31. My dad met us there and we met with Dr. Maria. When I got there to check in, the nurses kept getting confused that I was the 30 year old patient at the pediatric neurologists office! When I was called back, they weighed me, checked blood pressure, checked my height, and even my head circumference!!!!! I felt like Kinsley, my 4 year old! Dr. Maria talked to us about hydrocephalus and what we could do right now to investigate a little more and maybe have more answers. He joked with us, made us feel at ease, and had a great bedside manner. My sister told him that she had been praying for God to send someone like that to us that could make us feel better and shed a little more light on what was going on. Since he actually sees these kids after they are born and takes care of them he had a little more to offer. Did I mention he was a UF graduate and a Gator fan?!?! I knew we were in the right place. He told us that he wanted us to go ahead and have the Fetal MRI that is usally done at 28 weeks to see if we could see the extent of brain development under the fluid. I was only 21 weeks but it did not matter. He told us to wait a few minutes while he made a few calls. About 10 minutes later, he walked in to say that we had an appointement with Dr. Devoe tomorrow, the Dr. Edwards of Augusta, and a fetal MRI later TODAY! God was there with us making all of this possible. We ate lunch at P.F. Changs and headed back to the hospital for the MRI. For the record, that was one of the worst things I have ever done and do not want to do that again! I am extremely clausterphobic and that tunnel is so small! After the MRI, we left Augusta and went to Covington to stay with the Grants, close family friends, and met up with some other friends to try and enjoy the night before we got the results. We got up at 5:45 to head back for a filled day of tests and drs. in Augusta. We met with Dr. Devoe, his sonographer, his nurse practinioner, and 2 medical students. It was a bit overwhelming and I had a mild panic attack during the middle of my ultrasound. He looked at all the organs and the spine in 3d. Everything looked perfect and the only thing that we were still dealing with was hydrocephalus. He did not get a good read from the MRI because Tripp was too busy kicking, running, and flopping around in there. He said he saw what he wanted and expected from the few pictures that did come back clear enough and also from the ultrasound. He said that since I delevered Kinsley at 35 weeks, he wanted to start me on progesterone shots weekly to help prevent preterm labor. He also told me that I would deliver by c-section around 37 weeks at MCG. I have to go to Augusta every 4 weeks to see Dr. Devoe as well as keep my current appointemets with my regualr OB here. When Tripp is born and stable enough, a team of neurosurgeons will place a shunt into his brain to help drain the built up spinal fluid. Hopefully any damage that has been done to the brain can be reversed and the brain will function as normal. The baby and I will have to stay a while in Augusta. He will be in the NICU/ICU and we will be at the Ronald McDonald house. We go back June 27 to meet with labor and delivery, NICU/ICU, and the neurosurgeons. I will also see Dr. Devoe again.
Shots start today on June 14. A nurse will come out weekly to give them to me. Oh yeah, did I mention above that Dr. Devoe met with us on June 2 on his day off? He was leaving for vacation the next day and he wasn't even supposed to be there!!! God is hard at work!
Thanks for all of the prayers. Please keep them coming! I will update as often as I can. This is all still new to me!
I found out I was pregnant on January 24, 2011. I remember approaching John about it with an uneasy feeling. I was excited but had already figured out my due date and it was October 1. What's the big deal about that date most people would ask. Well, it's the day of the Florida-Alabama game and we have season tickets. All I could think about was "what is this going to do to our football season and traveling down for games?" Never did I imagine that this "Tripp" would take us in many other directions and that football season and not going to games would seem like the least of my problems.
Around week 6, I started to feel a little different and had a few issues but my dr. reassured me that what I was experiencing was completely normal and that every pregnancy is different. I started to feel better and grew a little more excited everyday about this baby that would join our family. We had our first OB appointment February 15 and got to see the heartbeat and our first picture to take home. Everything looked great and so we thought we were on the road for a normal, healthy pregnancy.
May 11 was the day that we had been awaiting for a long time. We took Kinsley with us to find out if she was going to have a baby sister or brother. As I was lying on the table, the dr. came in to help the sonographer read the ultrasound. He asked us if we wanted to know what we were having and he immediately said "it's definitely a boy, there is no denying it." I looked over at John and he was grinning from ear to ear. Then I heard "Whoa!" Hope, the sonographer, and the Dr. began to talk and look even more. I tried to motion for John to come over to me because I could not even get the words out of my mouth. I started to feel light headed, my ears started to ring, and I broke out into a cold sweat. I covered my eyes and could not look at the tv to even see the baby on there. John could not hear any of this and didn't know anything was going on. The dr. continued looking and asking Hope to go back to the brain to look. He finally spoke up and said that the lateral ventricles were enlarged and that he wanted to refer me to Dr. Edwards. Dr. Edwards is a specialist and I knew that this could mean the start of a long journey. He mentioned to us that the condition we were possibly facing was called hydrocephalus. He explained that he did not know much about this but that Dr. Edwards could do more extensive tests. I thought that I would have a couole of days to take this in while we waited for an appointment with Dr. Edwards. WRONG! When I checked out, they told me that Dr. Edwards would see me at 8:00 tomorrow morning.
The next morning, myself, John, and my sister Tiffany went to see Dr. Edwards to look at what we were possibly facing. After the sonographer took about 100 pictures, the dr. came in. He took a look and confirmed that the baby had Hydrocephalus and that it was possibly caused by aqueductal steniosis. He placed the baby in the moderate to severe category. He also suggested that we have an amniocentesis done to rule out other possible factors such as spina bifida, trisomy 13 or 18. He said that he felt like the spine was ok but was only 90% sure because he could not see the entire thing. Often times when there is hydrocephalus, there is also spina bifida. So again, there I go thinking that we can think about the amnio and have a day or two to sleep on since it came with the risk of miscarriage. WRONG again! He left us alone for about 5 minutes and came back to hear our decision. We agreed and within 5 minutes he was sticking that long needle into my abdomen. So scary! I then had to leave there and go have the RhoGam shot at my dr. because of my blood type. I was also told to go home and do much of nothing for the next 48 hours. So I did. BORING!!!
I know this post is long but I just want you guys to know the steps we have taken to get where we are now. We made a follow up appointment that same day to see Dr. Edwards again in 2 weeks and see of there was any change. On Monday May 23, Jill, Dr. Edwards nurse, called me to give me the results of the amnio. Aqueductal stenosis was the diagnosis and this was causing the hydrocephalus. We met with Dr. Edwards on Wednesday May 25 to take another look. The aquaducts were even more enlarged and measured 21 and 23 cm. He moved us into the severe range. Possibly the WORST day of my life. I knew we had so many peeple all over the country praying for us and I just felt like the prayers had not helped anything. I knew I needed them more than ever at that very moment but didn't know how much faith I had left. Dr. Edwards said that he wanted us to meet with Dr. B. Maria, a pediatric neurologist, from MCG. He travels from MCG to Albany once a month to see patients here and he would be able to see me June 9. I wasn't satisfied so I called to see if we could meet with him earlier if we traveled to Augusta. We finally got an appointment for June 1.
Myself, John and Tiffany headed out for our roadtrip to Augusta on May 31. My dad met us there and we met with Dr. Maria. When I got there to check in, the nurses kept getting confused that I was the 30 year old patient at the pediatric neurologists office! When I was called back, they weighed me, checked blood pressure, checked my height, and even my head circumference!!!!! I felt like Kinsley, my 4 year old! Dr. Maria talked to us about hydrocephalus and what we could do right now to investigate a little more and maybe have more answers. He joked with us, made us feel at ease, and had a great bedside manner. My sister told him that she had been praying for God to send someone like that to us that could make us feel better and shed a little more light on what was going on. Since he actually sees these kids after they are born and takes care of them he had a little more to offer. Did I mention he was a UF graduate and a Gator fan?!?! I knew we were in the right place. He told us that he wanted us to go ahead and have the Fetal MRI that is usally done at 28 weeks to see if we could see the extent of brain development under the fluid. I was only 21 weeks but it did not matter. He told us to wait a few minutes while he made a few calls. About 10 minutes later, he walked in to say that we had an appointement with Dr. Devoe tomorrow, the Dr. Edwards of Augusta, and a fetal MRI later TODAY! God was there with us making all of this possible. We ate lunch at P.F. Changs and headed back to the hospital for the MRI. For the record, that was one of the worst things I have ever done and do not want to do that again! I am extremely clausterphobic and that tunnel is so small! After the MRI, we left Augusta and went to Covington to stay with the Grants, close family friends, and met up with some other friends to try and enjoy the night before we got the results. We got up at 5:45 to head back for a filled day of tests and drs. in Augusta. We met with Dr. Devoe, his sonographer, his nurse practinioner, and 2 medical students. It was a bit overwhelming and I had a mild panic attack during the middle of my ultrasound. He looked at all the organs and the spine in 3d. Everything looked perfect and the only thing that we were still dealing with was hydrocephalus. He did not get a good read from the MRI because Tripp was too busy kicking, running, and flopping around in there. He said he saw what he wanted and expected from the few pictures that did come back clear enough and also from the ultrasound. He said that since I delevered Kinsley at 35 weeks, he wanted to start me on progesterone shots weekly to help prevent preterm labor. He also told me that I would deliver by c-section around 37 weeks at MCG. I have to go to Augusta every 4 weeks to see Dr. Devoe as well as keep my current appointemets with my regualr OB here. When Tripp is born and stable enough, a team of neurosurgeons will place a shunt into his brain to help drain the built up spinal fluid. Hopefully any damage that has been done to the brain can be reversed and the brain will function as normal. The baby and I will have to stay a while in Augusta. He will be in the NICU/ICU and we will be at the Ronald McDonald house. We go back June 27 to meet with labor and delivery, NICU/ICU, and the neurosurgeons. I will also see Dr. Devoe again.
Shots start today on June 14. A nurse will come out weekly to give them to me. Oh yeah, did I mention above that Dr. Devoe met with us on June 2 on his day off? He was leaving for vacation the next day and he wasn't even supposed to be there!!! God is hard at work!
Thanks for all of the prayers. Please keep them coming! I will update as often as I can. This is all still new to me!
