Sunday, April 25, 2010
Three Appointments in One Day!
April 21, 2010- Today I went to my first appointment with my new OB(s). Dr. Brown comes highly recommended. He will be the one to deliver Gabe. He is in a private practice near Baptist but has privileges at Vanderbilt. He is exactly what I am looking for in a Doctor (since I can't have my beloved Dr. Kyzer). First and foremost I liked him. Also, he is in a private practice. No residents or students to worry about. Although, Vanderbilt is the best place for Gabe to be, it is a teaching hospital, so there does tend to be an audience at times during treatment. Secondly, he has delivered babies with CHD. He explained that he would be in constant communication with Dr. Parra and the new high risk doctor I will be seeing later this afternoon.
My appointment went well. They drew blood after I drank the yucky orange sugar drink (glucola) to check for gestational diabetes. Again, I am gaining, gaining, gaining. I won't mention how much! Gabe's heart rate was in the 130's. Still in the normal range. I am to see Dr. Brown every two weeks. Everything seems to be going great! My glucose check came back negative for diabetes. Woo-hoo!
My next appointment that afternoon was with Dr. Kelly Bennett with the Vanderbilt Junior League Advanced Maternal Fetal Medicine. This group will monitor the baby very carefully. I will have an ultrasound at every visit. (once a month until 32 weeks, then twice a week). I love the thought of seeing my little angel boy. He is so cute! His profile reminds me of Jessie's. They measured every inch of him and made sure that everything was growing as it should be (from Brain to Spine). Afterwards, they were able to tell us how big he currently is. He is 2 lbs and 4 oz. This puts him in the 73% on size in utero. He's pretty big! I like that. I really want him to be on the big side at delivery. This will be a huge benefit going into his first surgery. I also want to add that the staff at the Advanced Maternal Fetal Office are wonderful. They were very concerned with our comfort. A very nice lady even came in and offered a basket of refreshments and drinks. Jeff and I didn't know what to think initially! I believe that the Junior League partially runs on the generosity of others. I will have to make it a point to bring in snacks and to help to support all other parents in our situation.
We then met with a geneticist. She basically met with us to answer any questions we might have had about the causes of CHD and the chances of having another child with CHD. (We laughed and said our chances were highly unlikely since Gabe will be our last! I think we will have our hands full with Jessie and him!) The chances are less than 5% for those of you that would like to know. It was nothing Jeff or I carried or did. 1 out of every 100 babies are born with a congenital heart defect. It is the #1 most common birth defect.
Afterward, they gave us a tour of the NICU and part of the Children's Hospital. We stopped by the Family Resource Center on the way out. It is a family information center created to help provide information to families of children with medical conditions. They have a library and we found a book titled "The Parents Guide to Children With Congenital Heart Conditions". We thought it might be enlightening. There is a forward from Sylvester Stallone, whose child was also born with a heart condition.
I probably will not write again until my next appointment with Dr. Brown on May 5th. Until then, please continue to keep Gabe in your prayers. I had wondered at times that since it had been a month since Gabe's diagnosis, if the prayers had continued. People forget in time and life goes on. But let me say that anytime that thought has crossed my mind, someone has always called to check on us or sent a card or left a beautiful pot of Daisies (my favorite! Thanks again my dear friend, G!) Or even mentioned out of the blue that someone else we don't even know is praying for us. I think that through your prayers, God has given me the strength to look past the agony and heartache and look forward to the days when my sweet angel is playing side by side with his big sister! We love you all! Thank you for your prayers. Keep 'em going!
My appointment went well. They drew blood after I drank the yucky orange sugar drink (glucola) to check for gestational diabetes. Again, I am gaining, gaining, gaining. I won't mention how much! Gabe's heart rate was in the 130's. Still in the normal range. I am to see Dr. Brown every two weeks. Everything seems to be going great! My glucose check came back negative for diabetes. Woo-hoo!
My next appointment that afternoon was with Dr. Kelly Bennett with the Vanderbilt Junior League Advanced Maternal Fetal Medicine. This group will monitor the baby very carefully. I will have an ultrasound at every visit. (once a month until 32 weeks, then twice a week). I love the thought of seeing my little angel boy. He is so cute! His profile reminds me of Jessie's. They measured every inch of him and made sure that everything was growing as it should be (from Brain to Spine). Afterwards, they were able to tell us how big he currently is. He is 2 lbs and 4 oz. This puts him in the 73% on size in utero. He's pretty big! I like that. I really want him to be on the big side at delivery. This will be a huge benefit going into his first surgery. I also want to add that the staff at the Advanced Maternal Fetal Office are wonderful. They were very concerned with our comfort. A very nice lady even came in and offered a basket of refreshments and drinks. Jeff and I didn't know what to think initially! I believe that the Junior League partially runs on the generosity of others. I will have to make it a point to bring in snacks and to help to support all other parents in our situation.
We then met with a geneticist. She basically met with us to answer any questions we might have had about the causes of CHD and the chances of having another child with CHD. (We laughed and said our chances were highly unlikely since Gabe will be our last! I think we will have our hands full with Jessie and him!) The chances are less than 5% for those of you that would like to know. It was nothing Jeff or I carried or did. 1 out of every 100 babies are born with a congenital heart defect. It is the #1 most common birth defect.
Afterward, they gave us a tour of the NICU and part of the Children's Hospital. We stopped by the Family Resource Center on the way out. It is a family information center created to help provide information to families of children with medical conditions. They have a library and we found a book titled "The Parents Guide to Children With Congenital Heart Conditions". We thought it might be enlightening. There is a forward from Sylvester Stallone, whose child was also born with a heart condition.
I probably will not write again until my next appointment with Dr. Brown on May 5th. Until then, please continue to keep Gabe in your prayers. I had wondered at times that since it had been a month since Gabe's diagnosis, if the prayers had continued. People forget in time and life goes on. But let me say that anytime that thought has crossed my mind, someone has always called to check on us or sent a card or left a beautiful pot of Daisies (my favorite! Thanks again my dear friend, G!) Or even mentioned out of the blue that someone else we don't even know is praying for us. I think that through your prayers, God has given me the strength to look past the agony and heartache and look forward to the days when my sweet angel is playing side by side with his big sister! We love you all! Thank you for your prayers. Keep 'em going!
My first OB Visit Post-Diagnosis
On April 5, 2010 I went to see my Obstetrician, Dr. Kyzer. This was my last visit with Dr. Kyzer (until post-delivery). Dr. Kyzer does not have Vanderbilt privileges, therefore, I am being referred to a new OB that will be able to deliver Gabe there. I am also being transferred to a second OB that I will be treating with as well. This other OB is with a high risk group at Vanderbilt. They will monitor the baby a little more closely, whereas my principal OB will handle routine obstetrical care and deliver Gabe once I am in labor. I am really saddened by the fact that Dr. Kyzer will not be delivering Gabe. I have been with her for 18 years. She delivered Jessie and quite honestly, I only trust her. It will be difficult for me to open up to another doctor (especially under these circumstances).
The appointment itself went well. I'm gaining weight quite well (too well)! Gabe's heart rate was in the 150's and the growth of my abdomen measured normal.
The appointment itself went well. I'm gaining weight quite well (too well)! Gabe's heart rate was in the 150's and the growth of my abdomen measured normal.
Dr. Parra- this is a long one
March 25, 2010- Our fist visit to Vanderbilt Children's Hospital for the first (of many) echocardiograms. We met Gabe's cardiologist, Dr. Parra. Jeff, Mama and I liked him very much despite the bad news he gave us. At least now we have a name for all that ails my little Gabe. He has been diagnosed with Hypoplastic Right Heart Syndrome which, in his particular case, consists of Tricuspid Artresia, Pulmonary Artresia, and d-Transposition of the Great Arteries.
Defects vary from individual to individual and although, one may be diagnosed with Hypoplastic Right Heart syndrome, their specific defect could be completely different than what Gabe has.
Let me try to explain these conditions as best and as briefly as possible:
Tricuspid Artresia- there is no tricuspid valve so blood can't flow normally from the right atrium to the right ventricle. As a result the right ventricle is small and not fully developed.
Pulmonary Artresia- No pumonary valve exists. Blood can't flow from the right ventricle into the pulmonary artery and on to the lungs.
d-Transposition of the Great Arteries- The pulmonary artery and the aorta (the major blood vessels leaving the heart) are switched so that the aorta arises from the right side of the heart and recieves blue blood (Unoxygenated blood) which is sent right back out to the body without becoming oxygen rich. The pulmonary artery arises from the left side of the heart, recieves red blood and sends it back to the lungs again. The result is that babies with this condition often appear very blue and have low oxygen levels in the bloodstream.
Dr. Parra basically explained that I would now be delivering at Vanderbilt (originally planned to deliver at Baptist) so that Gabe will have access to immediate cardiac care. Upon birth, he will immediately be taken to the NICU, where they will stabilize him and give him medication that will keep his patent ductus arteriosis (PDA) open (this valve closes upon birth to begin breathing oxygen) so that he will be able to continue breathing as if he were in the womb. They will continue with this medication until his first surgery within the first week of his life outside the womb.
Surgeries:
Gabe will have a series of 3 surgeries (all open heart). The first, as mentioned, will take place within his first week of life. It is called the Blalock Taussig Shunt. They will connect the aorta to the brach from the pulmonary artery with a shunt or tube.
The second, will likely occur at around 3 months of age. It is called a Bidirectional Glenn Shunt. In this surgery the main pulmonary artery is tied off and cut away. The superior vena cava is connected with the right pulmonary branch artery. The head, neck and upper body blue blood is sent to the lungs without going through the heart. The hole between the two top chambers is enlarged. The original shunt is removed.
The Third (and hopefully final) surgery will be around Gabe's 3rd birthday. It is called the Fontan Procedure. The the blue blood from the lower part of the body is directed to the lungs. This is done using the inferior vena cava, the right atrial wall and artificial material (gortex). A tube is fashioned through the top right part of the heart and connected to the right pulmonary artery branch. This rerouting allows the blue blood to enter the lungs without being pumped by the heart the heart remains available to receive the red blood from the lungs and then pump it to the body.
He will have a heart catheterization before the 2nd and 3rd surgeries to make sure that his lungs can handle the extra blood flow.
All in all, it was a good visit. Jeff and I felt better afterwards. It helped us to see what to expect and it was nice to have answers to all our questions. It was a lot to absorb and I was exhausted emotionally and physically after it was all over. We are very blessed to live in Nashville and have the resources that Vanderbilt offers so readily available. So many families have to uproot their lives and families to seek the treatment required by a state of the art facility. My prayers are with them as well as my dear boy tonight.
Defects vary from individual to individual and although, one may be diagnosed with Hypoplastic Right Heart syndrome, their specific defect could be completely different than what Gabe has.
Let me try to explain these conditions as best and as briefly as possible:
Tricuspid Artresia- there is no tricuspid valve so blood can't flow normally from the right atrium to the right ventricle. As a result the right ventricle is small and not fully developed.
Pulmonary Artresia- No pumonary valve exists. Blood can't flow from the right ventricle into the pulmonary artery and on to the lungs.
d-Transposition of the Great Arteries- The pulmonary artery and the aorta (the major blood vessels leaving the heart) are switched so that the aorta arises from the right side of the heart and recieves blue blood (Unoxygenated blood) which is sent right back out to the body without becoming oxygen rich. The pulmonary artery arises from the left side of the heart, recieves red blood and sends it back to the lungs again. The result is that babies with this condition often appear very blue and have low oxygen levels in the bloodstream.
Dr. Parra basically explained that I would now be delivering at Vanderbilt (originally planned to deliver at Baptist) so that Gabe will have access to immediate cardiac care. Upon birth, he will immediately be taken to the NICU, where they will stabilize him and give him medication that will keep his patent ductus arteriosis (PDA) open (this valve closes upon birth to begin breathing oxygen) so that he will be able to continue breathing as if he were in the womb. They will continue with this medication until his first surgery within the first week of his life outside the womb.
Surgeries:
Gabe will have a series of 3 surgeries (all open heart). The first, as mentioned, will take place within his first week of life. It is called the Blalock Taussig Shunt. They will connect the aorta to the brach from the pulmonary artery with a shunt or tube.
The second, will likely occur at around 3 months of age. It is called a Bidirectional Glenn Shunt. In this surgery the main pulmonary artery is tied off and cut away. The superior vena cava is connected with the right pulmonary branch artery. The head, neck and upper body blue blood is sent to the lungs without going through the heart. The hole between the two top chambers is enlarged. The original shunt is removed.
The Third (and hopefully final) surgery will be around Gabe's 3rd birthday. It is called the Fontan Procedure. The the blue blood from the lower part of the body is directed to the lungs. This is done using the inferior vena cava, the right atrial wall and artificial material (gortex). A tube is fashioned through the top right part of the heart and connected to the right pulmonary artery branch. This rerouting allows the blue blood to enter the lungs without being pumped by the heart the heart remains available to receive the red blood from the lungs and then pump it to the body.
He will have a heart catheterization before the 2nd and 3rd surgeries to make sure that his lungs can handle the extra blood flow.
All in all, it was a good visit. Jeff and I felt better afterwards. It helped us to see what to expect and it was nice to have answers to all our questions. It was a lot to absorb and I was exhausted emotionally and physically after it was all over. We are very blessed to live in Nashville and have the resources that Vanderbilt offers so readily available. So many families have to uproot their lives and families to seek the treatment required by a state of the art facility. My prayers are with them as well as my dear boy tonight.
2nd Set of Good News this Week!
On March 24, 2010, I got the rest of my amnio results. They are also negative. Ahhhhh the relief! Now we know that we only have Gabe's heart to worry about. We go to the pediatric cardiologist at Vanderbilt tomorrow. They will perform an echo cardiogram to look at Gabe's heart. Of course, we'll have more news by then. Until then, please continue to pray for our sweet angel as Gabe needs as many prayers as possible. We are still hoping for a complete misdiagnosis of the original ultrasounds. We would love to hear "sorry guys, your son was laying in an awkward position and his heart appeared abnormal. We were wrong, he is perfectly healthy!" We'll see...
Finally- Some Good News!
On March 15, 2010, the 1st part of our Amnio results came in. They were negative for Downs Syndrome, Trisomy 13 and Trisomy 18! It was such a joy to get such news! I know my coworkers must have thought I was a crazy basket case and over-emotional pregnant lady! I just sat in my office and cried with relief. Finally some good news. Now for the rest of the results...
Amniocenteses
On March 12, 2010 we went to see Dr. Fortunato at Maternal Fetal Group for an amniocenteses. As mentioned in my earlier post, we were hesitant to do this. I have been on the fence, wondering would it matter? I love my son so much already and the possibility of risking his life with a test is terrifying. After speaking to my OB, Dr. Kyzer (who is wonderful, I might mention), she explained that some chromosomal abnormalities were fatal. And if Gabe tested positive for any of these, we may want to prepare ourselves. After deliberating for a long time, it was decided to go ahead and follow through with the procedure.
The procedure was a cakewalk. The worst part about it was the anticipation and fear. Dr. Fortunato was kind enough not let me see the needle prior to penetration. They used an ultrasound to make sure where the best possible point of entry was without coming close to the baby. It was so odd to sit and watch this needle on the ultrasound screen. They told me to lay perfectly still as they did the procedure. At one point, it looked as if Gabe was touching the needle. I began to panic but stayed perfectly still. Through closed lips I mumbled "he's touching it!!! He's touching it!! Stop!" The Dr. just smiled and assured me that although it looked like Gabe was right next to the needle, he was quite a ways behind it and was not touching it. Within two minutes it was over. Now for the wait! They told us that we would receive the results for the 3 most common abnormalities (Down Syndrome, Trisomy 13 and Trisomy 18- the latter 2 are fatal) by the following Monday and the rest within another week. Thank you for your continued prayers. The Lord will see us through regardless of path we must take. Of this we are sure!
The procedure was a cakewalk. The worst part about it was the anticipation and fear. Dr. Fortunato was kind enough not let me see the needle prior to penetration. They used an ultrasound to make sure where the best possible point of entry was without coming close to the baby. It was so odd to sit and watch this needle on the ultrasound screen. They told me to lay perfectly still as they did the procedure. At one point, it looked as if Gabe was touching the needle. I began to panic but stayed perfectly still. Through closed lips I mumbled "he's touching it!!! He's touching it!! Stop!" The Dr. just smiled and assured me that although it looked like Gabe was right next to the needle, he was quite a ways behind it and was not touching it. Within two minutes it was over. Now for the wait! They told us that we would receive the results for the 3 most common abnormalities (Down Syndrome, Trisomy 13 and Trisomy 18- the latter 2 are fatal) by the following Monday and the rest within another week. Thank you for your continued prayers. The Lord will see us through regardless of path we must take. Of this we are sure!
Friday, April 23, 2010
Our 20 Week Ultrasound
On March 9, 2010 Jeff and I went for my 20 week ultrasound and OB appointment. This being our second child, I was very excited to find out if we were adding another girl to our family or could it possibly be...a boy! Imagine our surprise and elation when we found out that we were having the boy that Jeff, my father and brother all had hoped for! Finally more testosterone in the family! Our happiness was short-lived and quickly turned to fear when my Doctor explained to us that there may be something wrong with his heart. They immediately sent us to a maternal fetal doctor that specialized in reading ultrasounds. Unfortunately, this visit confirmed our fears. Our son had what appeared to be a malformation of the heart. We would know more after an echo cardiogram could be performed by pediatric cardiologist. They set up an appointment with a cardiologist at Vanderbilt Children's Hospital for the following week. We were also asked to consider an amniocenteses to rule out the possibility of any chromosomal abnormalities. It appears that congenital heart defects are common in babies with these abnormalities. Although, it seemed reasonable to find out. I was unsure about proceeding with this because of the possibility of miscarriage. We agreed to think about it and to get back with Dr. Fortunato's office the next day. So this is how our day ended. As I look back I wonder how I made it through that day. It was truly one of the worst in my life. It's through God's love, Jeff's strength, my mother and father's support and my 3 year old daughter's unconditional devotion that I got through that day. I am truly blessed. And although we have a hard road ahead, I feel it in my heart that our dear angel boy will still be smiling with us 20 years from now.
Subscribe to:
Posts (Atom)