6-11-2011
The surgery went well on Tuesday. I do not remember anything after receiving an epidural and breathing in the gas in the mask. We were told everything was straight forward and nothing unexpected occurred. Baby Rachel had turned positions from the time we left my room and got into the OR. When the incision into my uterus was made, Rachel reached her hand out and waved at everyone in the room- they said her hand was a nice pink color showing good circulation. It only took about 15 minutes to close up her spine. By later that night I could feel her kicking again and she had turned positions again.
I will not try to sugar coat anything- the recovery period is really rough. I have an incision with staples from my belly button down to about an inch above my pubic bone. You are given the spinal epidural and general anesthesia- it is hard to take the deep breathes you need to reopen your lungs. I am receiving breathing treatments and working with my incentive spirometer- coughing definitely hurts but you need to cough the junk out of your lungs. Another mom and I had our surgery on the same day but the formula for our general anesthesia was different from what was used previously- while we did not end up with low blood pressure issues- we have increased nausea and difficulties getting the anesthesia out of our systems. We are a few days behind in our recovery than what is normally expected.It is difficult to find comfortable positions in bed that do not pull too much on your incision. It is hard getting in and out of bed. They dc'd the catheter after about 24 hours- which is good because mine was causing a lot of painful bladder spasms. I am still having painful bladder spasms but they are slowing improving. I was able to shower and take 2 walks yesterday. I have been having trouble keeping my eyes open long enough to eat, drink and use my I.S. They decreased my amount of percocet last night due to my inability to stay awake. My head feels like I am constantly drunk- a feeling I despise greatly. IV demerol will never be my friend- I received one dose of that and couldn't lift my head off my pillow- made me very nauseated and uncomfortable. I have rashes everywhere the surgical prep was used and a blister on my back from the band-aid that covered my epidural site when it was removed. After the surgery you have some bleeding and spotting for a few days. Each day my recovery is a roller coaster ride. It is rough and makes you question if you did the right thing. I know it was the right thing to do for Rachel but holy s**t the recovery is hard.
Saturday, June 11, 2011
Monday, June 6, 2011
Pre-op testing
6-6-2011
Today I had my pre-op testing appointment. I had vitals, medical history, short physical exam and lab work done. My labs done were BMP, CBC w/diff, platelets, PT/INR and type and cross. The normal labs everyone has done for any surgery.
The food court in the Children's Hospital was really nice and unexpected - I love the fact that they have a Ben N Jerry's ice cream shop in it. (Of course, now that I saw that I have a craving for an ice cream cone)
Surgery is scheduled for 10:30 tomorrow morning. I most likely will not be updating my blog until 1-2 days after surgery. I know I will be on mag. sulfate after the surgery and I had that when I gave birth to Breanne and that stuff does make you feel crummy.
Thank you again everyone for your prayers and support. I miss my girls, my dogs, my house, my family and friends and look forward to coming home and recovering for the summer. While Nashville has been very nice and welcoming- there still is no place like home.
Today I had my pre-op testing appointment. I had vitals, medical history, short physical exam and lab work done. My labs done were BMP, CBC w/diff, platelets, PT/INR and type and cross. The normal labs everyone has done for any surgery.
The food court in the Children's Hospital was really nice and unexpected - I love the fact that they have a Ben N Jerry's ice cream shop in it. (Of course, now that I saw that I have a craving for an ice cream cone)
Surgery is scheduled for 10:30 tomorrow morning. I most likely will not be updating my blog until 1-2 days after surgery. I know I will be on mag. sulfate after the surgery and I had that when I gave birth to Breanne and that stuff does make you feel crummy.
Thank you again everyone for your prayers and support. I miss my girls, my dogs, my house, my family and friends and look forward to coming home and recovering for the summer. While Nashville has been very nice and welcoming- there still is no place like home.
Thursday, June 2, 2011
Enjoying Nashville
6-2-2011
As we are counting down for the surgery on Tuesday, Steve and I are continuing to enjoy being in Nashville. We discovered more parts of Centennial Park today - I love the airplane as it has part of my name written on it more than once (although I am sure ANG stands for something else but for now I will just pretend). The weather is staying consistent in the mid 90's.
We were able to get into the Hospital Hospitality House program today for our hotel stay. We are staying in the same hotel but needed to move to another room. We are grateful to be in this program and encourage others coming to Vanderbilt to work with their social worker to help get you into this program. This program also inspires me for future volunteer work when I am physically able to later this year. This was also a program that Renee had found for us before we had left Milwaukee but you can not apply for it until you have the referral from Vanderbilt.
It was nice that one of the doctors at Vanderbilt had connections with UWM and was familiar with the Milwaukee area. It was also very helpful the conversation I had with the neurosurgeon in our Chiari clinic regarding spina bifida. Plus the neurosurgeon here at Vanderbilt and our Milwaukee Chiari clinic one had done their residency together at John Hopkins. Kind of a small world at times.
Also to pass the time I started a new knitting project. I am using Berroco Glade yarn in lilac to make the drop stitch scarf pattern from the Stitch & B**ch Nation book. The pattern is super easy and works up fast. It will be a nice light weight scarf for the warmer months. (For those who don't already know I am an avid knitter and a yarn junkie) I had checked out several pattern books from our local library before we had left. I do not own any of the Stitch & B**ch books but I can tell you I will be putting them on my list for Santa this year.
As we are counting down for the surgery on Tuesday, Steve and I are continuing to enjoy being in Nashville. We discovered more parts of Centennial Park today - I love the airplane as it has part of my name written on it more than once (although I am sure ANG stands for something else but for now I will just pretend). The weather is staying consistent in the mid 90's.
We were able to get into the Hospital Hospitality House program today for our hotel stay. We are staying in the same hotel but needed to move to another room. We are grateful to be in this program and encourage others coming to Vanderbilt to work with their social worker to help get you into this program. This program also inspires me for future volunteer work when I am physically able to later this year. This was also a program that Renee had found for us before we had left Milwaukee but you can not apply for it until you have the referral from Vanderbilt.
It was nice that one of the doctors at Vanderbilt had connections with UWM and was familiar with the Milwaukee area. It was also very helpful the conversation I had with the neurosurgeon in our Chiari clinic regarding spina bifida. Plus the neurosurgeon here at Vanderbilt and our Milwaukee Chiari clinic one had done their residency together at John Hopkins. Kind of a small world at times.
Also to pass the time I started a new knitting project. I am using Berroco Glade yarn in lilac to make the drop stitch scarf pattern from the Stitch & B**ch Nation book. The pattern is super easy and works up fast. It will be a nice light weight scarf for the warmer months. (For those who don't already know I am an avid knitter and a yarn junkie) I had checked out several pattern books from our local library before we had left. I do not own any of the Stitch & B**ch books but I can tell you I will be putting them on my list for Santa this year.
Wednesday, June 1, 2011
Evaluation at Vanderbilt
6-1-2011
Our evaluation began with a detailed ultrasound. There were no changes to report from Thursday's ultrasound. Rachel's heartrate was 142 and she now weighs 1 lb.
We met with 3 different doctors, the financial advisor, social worker, a genetic counselor and fetal surgery coordinator. All of them were very good at explaining the surgery and the aspects that pertained to their jobs. I think it was very helpful that we had researched the surgery and the different aspects of spina bifida before attending this evaluation- I think for the parents who did not- it would be very over whelming. They are very strict regarding their criteria for surgery- especially with the mom's medical history and the mom's BMI (thank god for all of the lettuce I ate for the last 3 weeks as I was already overweight when I began this pregnancy. At this point (22 1/2 wks) I have gained 8 lbs but it looks and feels like a whole lot more than that.
We were approved for the surgery and will be the second case scheduled for Tuesday the 7th. One of the hard things for Steve and I to think about is the level of intervention and possible DNR status of Rachel should something go wrong during surgery or the first few weeks following surgery. I will have preop labs drawn on Monday. The surgery is done in the labor and delivery wing at the adult's hospital. The operative team consists of several different doctors, along with an ultrasound tech that continually monitors the baby and the usual anesthesia and nursing team that accompanies surgeries. It is expected that I would need to hospitalized for 5 days following the surgery. The entire surgery takes 3-4 hours.
On a crappy note our insurance company UMR has denied coverage for the surgery- stating that it is because we have no out of network benefits but yet no one in our network is qualified to perform this type of surgery. The estimated cost of the surgery is $68,000. They have a financial advisor at Vanderbilt that is going to continue to try to negotiate with UMR. It is sad that in some cases Medicaid (title 19) has covered this surgery but yet UMR whom I pay a lot of money for will not. Makes you wonder . . . .
Our evaluation began with a detailed ultrasound. There were no changes to report from Thursday's ultrasound. Rachel's heartrate was 142 and she now weighs 1 lb.
We met with 3 different doctors, the financial advisor, social worker, a genetic counselor and fetal surgery coordinator. All of them were very good at explaining the surgery and the aspects that pertained to their jobs. I think it was very helpful that we had researched the surgery and the different aspects of spina bifida before attending this evaluation- I think for the parents who did not- it would be very over whelming. They are very strict regarding their criteria for surgery- especially with the mom's medical history and the mom's BMI (thank god for all of the lettuce I ate for the last 3 weeks as I was already overweight when I began this pregnancy. At this point (22 1/2 wks) I have gained 8 lbs but it looks and feels like a whole lot more than that.
We were approved for the surgery and will be the second case scheduled for Tuesday the 7th. One of the hard things for Steve and I to think about is the level of intervention and possible DNR status of Rachel should something go wrong during surgery or the first few weeks following surgery. I will have preop labs drawn on Monday. The surgery is done in the labor and delivery wing at the adult's hospital. The operative team consists of several different doctors, along with an ultrasound tech that continually monitors the baby and the usual anesthesia and nursing team that accompanies surgeries. It is expected that I would need to hospitalized for 5 days following the surgery. The entire surgery takes 3-4 hours.
On a crappy note our insurance company UMR has denied coverage for the surgery- stating that it is because we have no out of network benefits but yet no one in our network is qualified to perform this type of surgery. The estimated cost of the surgery is $68,000. They have a financial advisor at Vanderbilt that is going to continue to try to negotiate with UMR. It is sad that in some cases Medicaid (title 19) has covered this surgery but yet UMR whom I pay a lot of money for will not. Makes you wonder . . . .
Getting ready for appointment
6-1-2011
We have our evaluation starting this morning at Vanderbilt. I received a call yesterday from Vanderbilt that we may qualify for a study they currently have going on. I do not know what the study is as the MOMS study had already been finished and published. I will update everyone regarding the study and the evaluation.
Here is the flow of appointments:
1030 ultrasound and consult with Dr. Carroll
1200 Dr. Tulipan Pediatric Neurosurgery
1300 Dr. Walker Neonatology
1400 Martha Dudek genetics counselor
Steve and I enjoyed yesterday walking around the Cheekwood Botanical Gardens and Mansion. The botanical gardens was relaxing- we both loved the Japanese Garden and the wooden train set ups. The mansion is 30,000 sq feet and contains an art museum. The art museum did have an exhibit from the Smithsonian in it- Steve's mom would have loved it as it was Faberge (I may have misspelled that one).
Still missing our girls and dogs (even the hamster's wheel at night). Thank you for every one's support!!
We have our evaluation starting this morning at Vanderbilt. I received a call yesterday from Vanderbilt that we may qualify for a study they currently have going on. I do not know what the study is as the MOMS study had already been finished and published. I will update everyone regarding the study and the evaluation.
Here is the flow of appointments:
1030 ultrasound and consult with Dr. Carroll
1200 Dr. Tulipan Pediatric Neurosurgery
1300 Dr. Walker Neonatology
1400 Martha Dudek genetics counselor
Steve and I enjoyed yesterday walking around the Cheekwood Botanical Gardens and Mansion. The botanical gardens was relaxing- we both loved the Japanese Garden and the wooden train set ups. The mansion is 30,000 sq feet and contains an art museum. The art museum did have an exhibit from the Smithsonian in it- Steve's mom would have loved it as it was Faberge (I may have misspelled that one).
Still missing our girls and dogs (even the hamster's wheel at night). Thank you for every one's support!!
Tuesday, May 31, 2011
Nashville here we are
5-31-2011
We arrived yesterday afternoon in Nashville. We left Milwaukee around 8:15 am- we had to deboard our plane due to a "fatal error" with the altimeter and reboard another plane. The flight was about 1 hr 8 minutes- smooth take off and landing. Steve experienced some vertigo with take off. We landed in Kansas City and had a 2 hour layover. The baby was very active the entire flight - lots of kicking. (not that it matters to most but they actually had real toliet paper at the Kansas City airport- those who have used the bathrooms in Milwaukee would be jealous). We left Kansas City at about 12:20 and landed in Nashville around 1:40. The 2nd flight was uncomfortable for me- I developed a cramp in my right side that left my abdomen in a constant state of contraction and I began to have pubic bone pain off and on- the baby was still kicking and moving a lot. Normally if I have any discomfort I can lay down and the pain goes away but I think being stuck in one position was the culperate. The take off and landing was still smooth. One thing I did notice from other take off and landings that I have experienced while being nonpregnant- is that when you are pregnant - your abdomen shifts slightly and puts lots of pressure on your bladder during that time period. Word to pregnant women definetely make sure your bladder is empty before getting on the plane. I am grateful for being able to fly- other than alittle discomfort on the 2nd flight- it was a great experience and it was the first time Steve and I had flown together. Thank you again to Dave and Marcia who made flying possible for us. Steve has been spoiling me and not letting me lift or carry anything- quite a feat with luggage.
Yesterday it was 95 degrees in Nashville and today it is around the same. Steve and I feel spoiled by the weather- it feels like we are back living in Tampa again. We found Vanderbilt University and Medical Center yesterday. Very easy to find off of West End Ave. The medical complex is very large (makes our new St.Mary's building look like a postage stamp). There are a lot of signs around the complex which helps with navigation. We have our evaluation tomorrow. I will make another entry tomorrow regarding the evaluation ( I will try to add as much detail as I can for the other Moms that will be coming to Vanderbilt for the same evaluation). Our hotel is on West End Avenue about 3/4 of mile from Vanderbilt. There are 3 Starbucks surrounding the drive to Vanderbilt from the hotel - 2 on West End and one on the other side of Vanderbilt- I am adding this tidbit as wi-fi access at our hotel is terrible. Also all of the parks in Nashville have free wi-fi. There is a large variety of places to eat and shop at. There is also a small grocery store named Apple Market on West End Avenue also if needed - our room has a small kitchette with full size refridgerator, microwave, kitchen sink, and two stove top burners- this is a very good thing as we can not afford to eat out frequently. If you continue down West End Avenue into the downtown area- there are several blocks of gift shops, bars and grills with live music and a lot of western wear shops. Great place to just walk and take your mind off of the upcoming evaluation. For the men - at the end of West End Avenue right across from the Hardrock Cafe you can sit in a park that overlooks the river and look longingly at the football stadium.
We miss our girls and the dogs a lot. We keep taking pictures of everything we think the girls would like to see. We stopped at Centennial Park yesterday as they have a replica of the Parthanon that you can walk around- we didn't go inside for the tour. I think the tour is $6 for adults. The replica will be of great interest to Alicia as she loves the movie Percy and the Lightening Thief.
We arrived yesterday afternoon in Nashville. We left Milwaukee around 8:15 am- we had to deboard our plane due to a "fatal error" with the altimeter and reboard another plane. The flight was about 1 hr 8 minutes- smooth take off and landing. Steve experienced some vertigo with take off. We landed in Kansas City and had a 2 hour layover. The baby was very active the entire flight - lots of kicking. (not that it matters to most but they actually had real toliet paper at the Kansas City airport- those who have used the bathrooms in Milwaukee would be jealous). We left Kansas City at about 12:20 and landed in Nashville around 1:40. The 2nd flight was uncomfortable for me- I developed a cramp in my right side that left my abdomen in a constant state of contraction and I began to have pubic bone pain off and on- the baby was still kicking and moving a lot. Normally if I have any discomfort I can lay down and the pain goes away but I think being stuck in one position was the culperate. The take off and landing was still smooth. One thing I did notice from other take off and landings that I have experienced while being nonpregnant- is that when you are pregnant - your abdomen shifts slightly and puts lots of pressure on your bladder during that time period. Word to pregnant women definetely make sure your bladder is empty before getting on the plane. I am grateful for being able to fly- other than alittle discomfort on the 2nd flight- it was a great experience and it was the first time Steve and I had flown together. Thank you again to Dave and Marcia who made flying possible for us. Steve has been spoiling me and not letting me lift or carry anything- quite a feat with luggage.
Yesterday it was 95 degrees in Nashville and today it is around the same. Steve and I feel spoiled by the weather- it feels like we are back living in Tampa again. We found Vanderbilt University and Medical Center yesterday. Very easy to find off of West End Ave. The medical complex is very large (makes our new St.Mary's building look like a postage stamp). There are a lot of signs around the complex which helps with navigation. We have our evaluation tomorrow. I will make another entry tomorrow regarding the evaluation ( I will try to add as much detail as I can for the other Moms that will be coming to Vanderbilt for the same evaluation). Our hotel is on West End Avenue about 3/4 of mile from Vanderbilt. There are 3 Starbucks surrounding the drive to Vanderbilt from the hotel - 2 on West End and one on the other side of Vanderbilt- I am adding this tidbit as wi-fi access at our hotel is terrible. Also all of the parks in Nashville have free wi-fi. There is a large variety of places to eat and shop at. There is also a small grocery store named Apple Market on West End Avenue also if needed - our room has a small kitchette with full size refridgerator, microwave, kitchen sink, and two stove top burners- this is a very good thing as we can not afford to eat out frequently. If you continue down West End Avenue into the downtown area- there are several blocks of gift shops, bars and grills with live music and a lot of western wear shops. Great place to just walk and take your mind off of the upcoming evaluation. For the men - at the end of West End Avenue right across from the Hardrock Cafe you can sit in a park that overlooks the river and look longingly at the football stadium.
We miss our girls and the dogs a lot. We keep taking pictures of everything we think the girls would like to see. We stopped at Centennial Park yesterday as they have a replica of the Parthanon that you can walk around- we didn't go inside for the tour. I think the tour is $6 for adults. The replica will be of great interest to Alicia as she loves the movie Percy and the Lightening Thief.
Saturday, May 28, 2011
Medical record ultrasound reports
5-28-2011
I picked up copies of our ultrasound reports to take with to Vanderbilt. I will transcribe the oldest report first- the one that the spina bifida was first detected on.
4-25-2011
With respect to fetal anatomy:
Abnormalities in the head were noted during this scan; please see the anatomy comments. The fetal face appears normal. Anatomy of the fetal thorax appeared within normal limits. The cardiac size and structures appeared sonographically normal at the four chamber long axis and short views and cardiac rhythm was regular. The abdominal cavity appears normal. The fetal stomach appears normal. Both kidney appear within normal limits. The fetal bladder appears normal. The abdominal wall appears intact. Abnormal spine: please see anatomy comments for further details. Abnormal extremities: please see anatomy comments for further detail. The placenta appears within normal limits. There is a 3 cord vessel with normal insertion site.
Anatomy comments:
The following anomalies were noted:
Meningmyelocele- A fetal neural tube defect was noted in the lower lumbar region. The defect was studied using 3D rendering in the skeletal mode. The defect appeared to arise at L4.
There is an associated Arnold Chiari Malformation. There was also bilateral clubbing of the lower extremities noted. There was movement of the fetal extremities at the level of the pelvis and the knee. There was NO evidence of movement at the fetal ankle. It should be noted the lateral ventricle measure 5.4mm which is within normal limits for this gestational age.
There were NO other abnormalities noted that would suggest a diagnosis of fetal chromosome aneuploidy.
Impression:
Singleton IUP
16 wks 4 days by this Ultrasound (EDC=October 7,2011)
17wks 2 days by dates (EDC=October 1, 2011)
Variable presentation
Posterior placenta
Estimated Fetal weight = 0 lbs 6 oz
Meningomyelocele
Arnold Chiari Malformation
Talipes
Ultrasound from 5-26-2011
With respect to fetal anatomy:
The fetal cranium appeared normal in shape. The choroid plexus was well visualized, the lateral ventricles were not dilated and the midline structures were not deviated. The cerebellum and cisterna magna were visualized. The fetal face appears normal. Anatomy of the fetal thorax appeared within normal limits. The cardiac size and structures appeared sonographically normal at the four chamber long axis and short axis views and cardiac rhythm was regular. The abdominal cavity appears normal. The fetal stomach appears normal. Both kidneys appear within normal limits. The fetal bladder appears normal. The abdominal wall appears intact. Abnormal spine: please see the anatomy comments for further details. Abnormal extremities: please see the anatomy comments for further detail. The placenta appears within normal limits. There is a 3 vessel cord with normal insertion site.
Anatomy comments:
The following anomalies were noted:
Meningocele- a low lumbar neural tube defect was seen. It appears to arise at L4. There was NO associated fetal ventriculomegaly. The lateral ventricle measured 7mm. The cisterna magna measured 4mm. The cerebellum appeared slightly displaced posteriorly. The fetal cranial shape was consistent with "lemon sign".
Talipes- bilateral clubbing of the lower extremities was noted. There was evidence of movement of the lower exptremities at the level of the knee.
The amniotic fluid volume was normal. There was NO apparent adverse effects from the amniocentesis.
Impression:
Singleton IUP
20wks 4 days by this Ultrasound (EDC=October 10,2011)
21wks 5 days by dates (EDC=October 1,2011)
Breech presentation
Posterior placenta
Estimated fetal Weight = 0 lbs 14 oz
Meningocele
Talipes
I picked up copies of our ultrasound reports to take with to Vanderbilt. I will transcribe the oldest report first- the one that the spina bifida was first detected on.
4-25-2011
With respect to fetal anatomy:
Abnormalities in the head were noted during this scan; please see the anatomy comments. The fetal face appears normal. Anatomy of the fetal thorax appeared within normal limits. The cardiac size and structures appeared sonographically normal at the four chamber long axis and short views and cardiac rhythm was regular. The abdominal cavity appears normal. The fetal stomach appears normal. Both kidney appear within normal limits. The fetal bladder appears normal. The abdominal wall appears intact. Abnormal spine: please see anatomy comments for further details. Abnormal extremities: please see anatomy comments for further detail. The placenta appears within normal limits. There is a 3 cord vessel with normal insertion site.
Anatomy comments:
The following anomalies were noted:
Meningmyelocele- A fetal neural tube defect was noted in the lower lumbar region. The defect was studied using 3D rendering in the skeletal mode. The defect appeared to arise at L4.
There is an associated Arnold Chiari Malformation. There was also bilateral clubbing of the lower extremities noted. There was movement of the fetal extremities at the level of the pelvis and the knee. There was NO evidence of movement at the fetal ankle. It should be noted the lateral ventricle measure 5.4mm which is within normal limits for this gestational age.
There were NO other abnormalities noted that would suggest a diagnosis of fetal chromosome aneuploidy.
Impression:
Singleton IUP
16 wks 4 days by this Ultrasound (EDC=October 7,2011)
17wks 2 days by dates (EDC=October 1, 2011)
Variable presentation
Posterior placenta
Estimated Fetal weight = 0 lbs 6 oz
Meningomyelocele
Arnold Chiari Malformation
Talipes
Ultrasound from 5-26-2011
With respect to fetal anatomy:
The fetal cranium appeared normal in shape. The choroid plexus was well visualized, the lateral ventricles were not dilated and the midline structures were not deviated. The cerebellum and cisterna magna were visualized. The fetal face appears normal. Anatomy of the fetal thorax appeared within normal limits. The cardiac size and structures appeared sonographically normal at the four chamber long axis and short axis views and cardiac rhythm was regular. The abdominal cavity appears normal. The fetal stomach appears normal. Both kidneys appear within normal limits. The fetal bladder appears normal. The abdominal wall appears intact. Abnormal spine: please see the anatomy comments for further details. Abnormal extremities: please see the anatomy comments for further detail. The placenta appears within normal limits. There is a 3 vessel cord with normal insertion site.
Anatomy comments:
The following anomalies were noted:
Meningocele- a low lumbar neural tube defect was seen. It appears to arise at L4. There was NO associated fetal ventriculomegaly. The lateral ventricle measured 7mm. The cisterna magna measured 4mm. The cerebellum appeared slightly displaced posteriorly. The fetal cranial shape was consistent with "lemon sign".
Talipes- bilateral clubbing of the lower extremities was noted. There was evidence of movement of the lower exptremities at the level of the knee.
The amniotic fluid volume was normal. There was NO apparent adverse effects from the amniocentesis.
Impression:
Singleton IUP
20wks 4 days by this Ultrasound (EDC=October 10,2011)
21wks 5 days by dates (EDC=October 1,2011)
Breech presentation
Posterior placenta
Estimated fetal Weight = 0 lbs 14 oz
Meningocele
Talipes
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