Wednesday, April 8, 2009

April 8th: National Cushing's Disease Awareness Day


Happy Birthday Harvey Cushing!

Harvey Williams Cushing (April 8, 1869 - October 7, 1939) was an American neurosurgeon and a pioneer of brain surgery. He is widely regarded as the greatest neurosurgeon of the 20th century and often called the "father of modern neurosurgery".

From: Surgical-tutor.org.uk

Harvey Cushing (1869-1939)

Cushing graduated from Harvard Medical School in 1895 and underwent his initial training with William Halstead. In 1900 he traveled to Europe and worked with Theodor Kocher and Victory Horsley, the founder of British neurosurgery. On returning to the United States he joined the staff at John Hopkins Hospital where he began his neurosurgical studies. In 1912 he was appointed professor of surgery at Harvard Medical School and surgeon-in-chief at the newly opened Peter Bent Brigham Hospital.

He was a pioneering neurosurgeon and developed many of the basic techniques and procedures used in neurosurgery today. Amongst his many paper the most important relate to the method of destruction of the trigeminal ganglion (1900), infiltrative analgesia (1902), the function of the pituitary gland (1910), experimental hypophysectomy (1910), the introduction of electrocoagulation (1928) and basophil adenomas of the pituitary gland (1932).

In addition to his clinical writings he was awarded the Pulitzer prize in 1926 for his book entitled the Life of Sir William Ostler. The endocrine disorder named after him is obviously Cushing's Syndrome or Disease. Cushing's Syndrome is the state of prolonged exposure to corticosteroids resulting from either excessive cortisol production or steroid medication. Cushing's Disease is pituitary dependent adrenocortical hyperplasia due to a basophilic pituitary microadenoma.

The causes of Cushing's Syndrome are:
• Cushing's Disease (65%)
• Ectopic ACTH production (15%)
• Adrenal adenoma (15%)
• Adrenal carcinoma (5%)

"I would like to see the day when somebody would be appointed surgeon somewhere who had no hands, for the operative part is the least part of the work"
Letter to Dr Henry Christian Nov 20, 1911.



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What a fitting day for me to come back and post about my life since August.

I am sorry for not coming back and posting regular updates. I have received many well wishes and questions over the past months. Each message made me smile as I realized this little-blog-that-could is indeed fulfilling a purpose as it reaches out to people suffering from Cushing’s even as I am not there to help. I will try to get around to answering each question soon, so check back often.

I am doing well. My baby Elena is almost seven months old. I have NO time to do anything anymore, and my online time has suffered (but my sweet pumpkin hasn’t!). I now have an iPhone, so I can do some stuff on the internet, but there are tasks that are easier on a real computer. I will make an extra effort to keep things updated periodically.

There is a lot more I want to post about the seven months since delivery. I have had some great times and some difficult times as my body recovered.

Still, I wouldn’t change my actions for anything in the world. I have my little baby in my arms, and I am happy to share my day with her. She is truly a bundle of joy, and I am thrilled to be a mom. I am lucky beyond belief, and I am proof positive that a woman diagnosed with Cushing’s disease can go on to have a beautiful baby if she puts her mind to it.









I am excited to share one bit of good news:

I scheduled an appointment with my neurosurgeon for late May 2009. I will have a 3T (Tesla) pituitary MRI with and without contrast done early morning. Then, I will sit down with the neurosurgeon to review the images at my appointment. This doctor cleared me for surgery in Dec-07, but I waited to try for a baby. It is very likely that my two pituitary tumors (3 millimeters on the left and 5 millimeters on the right) have grown, as the pituitary gland is very active during pregnancy and after. He told me to come back when I was ready for surgery, and we can get back on track to recovery. I am ready for surgery.

My dear sweet baby is about to wake up from a nap, and my time at the keyboard is limited. For now, I will bid you adieu, and I encourage you to keep checking back.

… There she is now. Gotta go get the baby! She’s awake. 

~Melissa

Tuesday, August 5, 2008

Baby Bump, Nursery, and 32-week Ultrasound visit

Ok. Finally. At the request of many friends, Cushing's allies, and far away family members, I'm posting some photos of me pregnant with my little peanut pumpkin pudding pie.

It may seem odd to post baby things here on the Cushing's blog. However, we feel that we are blessed beyond measure with our little baby. Cushing's and pregnancy are thought to be mutually exclusive, meaning the medical community believes that a Cushing's patient's hormones are so messed up that the body cannot perform basic child-making functions. Luckily, I caught my Cushing's early and with the proper research and consultations, we decided to try for a baby before I have pituitary surgery.

We of course are thrilled, and we are super happy as we await the birth of our first little girl, now only 6 short Wednesdays away! We have a c-section scheduled for Wednesday, September 17th. I will be 38 weeks pregnant at that time. Because I had a 2 cm x 2 cm uterine fibroid removed in December 2007, my doctors feel that the contractions and pushing required to deliver naturally will put my weakened-from-fibroid-removal uterus under great distress. In fact, one said the uterus could 'rupture', the other said, 'explode.' I'm fine with the c-section!

In addition, sharing my pregnancy story here on this blog gives women with Cushing's a little hope about the possibility of having a child.

~Melissa

P.S. May I also proudly add that I have only gained 13 pounds with this pregnancy?! The baby is growing just fine. In fact, she is at the top of the growth charts at the 98 percentile when they measure her leg and arm bones. I have another ultrasound scheduled on WED August 3rd and nearly every WED until mid September. I'll have so much video and photos of this baby before she is even born! But each time we see her on that TV screen, we love her more and more!

P.S.2 Here's to the summer of the wild printed shirts! :)

Melissa, May 24, 2008 (21 weeks pregnant)


Melissa, May 24, 2008 (21 weeks pregnant)


Jonathan and Melissa, June 6, 2008 (22 weeks pregnant)


Melissa, June 15, 2008 on Father's Day (24 weeks pregnant)


Melissa, June 16, 2008 on the way to the ultrasound (24 weeks pregnant)


Melissa, June 16, 2008 on the way to the ultrasound (24 weeks pregnant)


Melissa, July 27, 2008 (30 weeks pregnant)


Melissa and Jonathan, July 27, 2008 (30 weeks pregnant)


Melissa and Jonathan, July 27, 2008 (30 weeks pregnant)


Melissa and Jonathan, July 27, 2008 (30 weeks pregnant)


Melissa, August 2, 2008 (31 weeks pregnant)


Melissa & Jonathan, August 2, 2008 (31 weeks pregnant)


Melissa & Jonathan, August 2, 2008 (31 weeks pregnant)


Artistic rendering of a baby at 32 weeks






Jonathan and Melissa share a love of geography and history. We want to raise a thoughtful and socially conscious child who is curious, giving, caring, loving, respectful and independent. We hope she will begin learning from her very first days in her nursery.

Baby Girl's nursery--view from the door


Baby Girl's nursery--general room view, moving left


Baby Girl's nursery--general room view, moving left


Baby Girl's nursery--general room view, moving left


Baby Girl's nursery--general room view, moving left


Baby Girl's nursery--general room view


Baby Girl's nursery--heritage maps. Countries where Jonathan and Melissa's families are from


Baby Girl's nursery--closet! Dresser was my great aunt's


Baby Girl's nursery--clothes hamper


Baby Girl's nursery--the French connection


Baby Girl's nursery--general room view


Baby Girl's nursery--toy chest. This was my cedar hope chest as a child. J & I added 3 inches of foam and recovered it, with help from my parents


Baby Girl's nursery--toy chest. See, it opens!


Baby Girl's nursery--shelves. Mixture of books, Filipino wood carvings, photos of the happy parents, and childhood memorabilia of Jonathan's


Baby Girl's nursery--the start of a great library


Baby Girl's nursery--the piggy bank. I made this and spent 15 hours plus on this one project. Silver money only, so we don't think we are rich on pennies!


Baby Girl's nursery--my mom made the drapes. Jonathan sanded and stained the rocking horse found at a resale baby store, and my niece added the finishing stains


Baby Girl's nursery--Jonathan sanded and stained the rocking horse found at a resale baby store, and my niece added the finishing stains


Baby Girl's nursery--general room view. This converts from a baby bed to a toddler bed to a day bed to a full size bed


Baby Girl's nursery--my niece Lisa painted these. She is so talented!


Baby Girl's nursery--the crib for our sassy little girl


Baby Girl's nursery--crib and changing table


Baby Girl's nursery--changing table and map of the world


Baby Girl's nursery--changing table. Thanks to Cassie for telling me I could find these cubbies for $5 each at Target!


Baby Girl's nursery--travel map. Why just learn ABCs when she can just as easily learn to spell Togo, Laos, Chad, Iran, Iraq, Oman, Qatar, Ghana, Gabon, Kenya, Benin, Niger, Yemen, Syria, India, China, Japan, Sudan, Egypt, Korea, Congo, Uganda, and Guyana while getting her diaper changed! Especially Djibouti! This map is mounted on foam board, and it will be a place to record her travels with map pins.




ULTRASOUND VISIT, 32 WEEKS

Melissa at the ultrasound, August 6, 2008 (32 weeks pregnant)


Baby's face at the 32 week ultrasound, August 6, 2008. She already has hair!


Our first ultrasound, January 29, 2008, 4 weeks pregnant. We've come a long way, baby! Click on image to make it bigger.


Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.


Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.


Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.


Our 5 lb 11 oz Baby at the 32 week ultrasound, August 6, 2008. Click on image to make it bigger.


I've only gained 13 pounds. Doc says it is all baby, and that she will be a big one!

5 lb 11 oz baby
1 lb placenta
+ 2-3 lbs amniotic fluid
10 lb of baby
+ 3 lb in my breasts (he mentioned this too!)
13 lb of weight gain

I'm 32 wks 0 days today, baby measures 35 wks 4 days, so nearly a month bigger.

According to the profile of her abdomen, they see very little fat on her. She is a lean baby! Measurements of baby's bones (thigh, arm, foot, and skull) are all in the 90th percentile or higher. Abdomen is also 90th percentile. Doc said since all of these numbers are high, it shows that she is genetically disposed to being a big baby. He asked me to get data from our births and our siblings' births to compare. From what I know, big babies run in our family.

• Jonathan was 8 lbs. His sister was 7 lb 10 oz but 2 weeks early. J is 6 foot 1 inches and his sister is 5 foot 11 inches. Their maternal grandfather was 6 foot 4 inches tall.

• My oldest sister was 10 lb 5 oz but 3 weeks late. Her children weighed 7 lb 10 oz, 7 lb 10 oz, and 7 lb 10 oz. My sister is 5 foot 10 inches.

• My middle sister was 9 lb 6 oz. Her children weighed 8 lb 11 oz, and 8 lb 14 oz. Both were 11 days early. My sister is 5 foot 11 inches.

• I was 8 lb 6 oz. I am 5 foot 7 inches.

Based on data from the past visits and today’s visit, the OB projects that our baby will be 9 pounds 4 to 8 ounces by week 38 (c-section date) and 10 pounds 4 to 8 ounces by 40 weeks (full term!).

I was a bit shocked to think that I am carrying a baby that is already nearly 9 months big. The weight on my bladder is already so much… and she will gain another 3.5 pounds before delivery!

Baby was lying head down with her spine on my right side and facing my left side. She moving all around during the scan. It was the 1 hour after breakfast so she was doing her usual kallistinics!

She was chewing on her fingers and blocking her face with her forearms at various times of the ultrasound. They can see she has hair already.

Her internal organs continue to function as they should. Her stomach and bladder are full, so she is eating well. Her heart and brain look good, too.

The placenta is uniform and healthy, so she is getting the nourishment she needs. The amniotic fluid is normal. This is something to watch with a fast growing baby and a mother who may develop gestational diabetes. If the amniotic fluid were to rise while the baby continued to grow, it would indicate that the baby was becoming a little diabetic, too. Fortunately, that is not the case with us. See above where I detail our large family.

As for the big two that we are watching for me: gestational diabetes and pre-eclampsia. All looks good. He read my 3 hour glucose tolerance test as normal. I took myself off the diabetic diet, but we all agreed it would be good for me to moderate my intake of carbs in the last 6 weeks. I agreed… what a mom does for her baby!! As for pre-eclampsia, I have not experienced much swelling, I am not spilling protein into my urine. So this appears to be good for now. My doctors will continue to monitor me closely on a weekly basis.

*****

Now we start on my weekly visits with both my high risk OB and my regular OB.

At my OB’s office last week, I had the first of the non-stress tests, or NSTs. This involved placing a fetal heart monitor on me and recording how the baby’s heart rate is affected when she moves or when I am having contractions. The nurse asked me if I was feeling contractions yet. I said no. I did enjoy this part a great deal. I was told to relax in the reclining chair for 25-30 minutes and hold the buzzer in my hand. After the nurse placed the fetal heart monitor on my exposed belly, I was instructed to press the button each time I felt the baby move. I felt like I was on a game show with a buzzer in my hand, or less glamorously like a kid in elementary school wearing Davy Jones-sized head phones during the hearing test. We had to push a button whenever we heard the different tones coming through the left and right sides. Does anyone else remember that besides me?! I digress. Anyway, the nurse confirmed that indeed the baby was fine and that I wasn’t experiencing contractions. They will do this test weekly at every OB visit.


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I am relieved to have this much attention. I have gotten to the point where I worry about the baby. I made it through the hard part of the monthly appointments. Getting from weekly appointment to weekly appointment will be much easier. I am grateful for the relief I will feel as we move through these next six weeks!

~MELISSA