Monday, March 31, 2014

Counting Down the Days

It's official, the surgery is scheduled for Monday, April 7th at 10:30am! One week to go!

After our long week of appointments, Cameron and I met with the board of doctors once again last Thursday. In order to be accepted for the fetal repair there are many qualifications you have to meet. When they initially performed the research trial on the fetal repair, the MOMS trial, one of the qualifications was that the moms BMI while pregnant couldn't exceed 35. This qualification in the study became a qualification once the surgery was opened to the public. My BMI did not meet this expectation and normally I would be turned down by every facility that offers this procedure. I am excited to announce that Dr. Crombleholme is starting his own research trial called MOMS Plus. The MOMS Plus trial allows mothers with BMIs 35-40 the option of fetal repair as long as they meet the other qualifications. I will actually be the first patient of the MOMS Plus study!!

Cameron and I are back in Kansas City for the week and will be flying back out to Colorado on Sunday!

Monday, March 24, 2014

A Denver Update

Cameron and I have been in Denver for a few days, we drove all day Friday and spent our weekend just being together. Today we had our first day of appointments at The Children's Hospital of Colorado. Our morning started at 8:00a with an MRI, which was very long! Clark was not a fan of all the noise! He was moving and kicking the whole time! (Yay for kicking!!) After the MRI we headed up to do a fetal echocardiogram (fetal echo) at 11:00a. A fetal echo is just like an ultrasound but looks, listens, and tracks the blood flow of Clark's heart and would show if there were any abnormalities. We are so thankful to announce that his heart is perfect! We then met with another ultrasound doctor at 2:30p who measured Clark head to toe. Clark is weighing in at 1 pound 7 ounces, very healthy! His legs are very long and measure in two weeks ahead of his gestational age and showed no signs of clubbing!

Left Foot
Right Foot
At the end of out long day of appointments we met with the board of doctors who determined if Clark and I were candidates for the in utero surgery, they called it our 'family meeting'. We met with a pediatrician, two high risk obstetricians, a geneticist, a MRI specialist, and the fetal surgeon.  During the family meeting we went over what the procedure would look like and all the risks that come along with it. After much discussion on if we should do the surgery or not, we decided we will proceed with getting qualified for the surgery. The next step for us is to meet with another anesthesiologist and another high risk obstetrician; we will meet with them Tuesday or Wednesday. The anesthesiologist will check to make sure that I can handle going under anesthesia and that I'll be able to come out of it with out any problems. The high risk obstetrician will go over my medical history and verify once again that the surgery won't be too hard on my body. Once we meet with these doctors, they will then tell the fetal surgeon if we are okay to book a surgery date!

- We are so thankful that our little Clark's legs are healthy and kicking!! We also praise God that his feet are growing as they should and are not showing signs of clubbing! Please pray that his kicking continues and that his legs continue to grow healthy and strong!

- We are so thankful that Clark's heart showed no abnormalities and is growing just as it should!

-We ask for prayer that we are able to pass the exams with the anesthesiologist and high risk obstetrician with no problems!

-We ask that you pray over our hearts and minds. We are very drained emotionally and physically!

Much love, Cyrena

Monday, March 17, 2014

We're going to Denver!

Cameron and I just got the call that we will be going to Denver next week! We have our first appointments starting Monday, March 24th at 8:00am and are looking at surgery at the end of the week or the beginning of the following week! We are so thankful for all the prayer, love and support each one of you has shown us!

I'll post more information as it comes!

Much love, Cyrena

Sunday, March 16, 2014

A Little Good News!

Last Tuesday Cameron and I met with the Fetal Health team at Children's Mercy. We started the day off with a two hour ultrasound where they measured Clark's bones and tracked his movements! It was wonderful to see our little man! We also met with the Children's Mercy fetal surgeon, Dr. Iqbal, who showed us Clark's opening on his back and went over what the surgery would look like. Cameron and I got to meet all of the nurses, the anesthesiologist for the cesarean section, and our new high risk OB-GYN who will deliver Clark! They are such a wonderful, encouraging team and we are so lucky to be working with the best.

When we met with the OB-GYN, Dr. Jodicke, he had some news that we really were not expecting. Dr. Jodicke told us that the full results form the amniocentesis were finally in and there was a concern with Clark's Y chromosome. When the genetics team took a closer look at Clark's cells, they noticed that in half of his cells the Y chromosome was elongated. This means that there is extra 'material' attached to the end of his Y chromosome, but at the time they did not know if this extra material was just extra Y chromosome, which is not a health concern, or if it was material from a different chromosome, which would result in Clark having a syndrome. As you can imagine, this was quite shocking and we weren't really sure how to handle this information. We then met with a genetics counselor who educated us on how they run the test to see what this material was and that it could take until Friday to have the results.

After a long week of waiting, Friday rolled around! We talked to the genetics counselor and it turns out that the extra material on his Y chromosome is just extra Y chromosome, PRAISE GOD! We were so excited to hear this news! The fetal team sent the rest of our file to Colorado and we should hear Monday if they have made a decision and when we will fly out!

- We are so thankful that our little man has very strong legs and feet! It is a HUGE blessing that his legs are moving and we pray that they will continue to kick away!

- We are so blessed to have the Children's Mercy fetal team standing behind us and encouraging us throughout this whole process.

-We are so, so thankful that our little man's chromosomes are normal and that we don't have any health concerns regarding his genes!

-We are so very thankful that I will be able to come home a few weeks after the surgery! Usually, if you are having an in utero surgery, you have to stay in the city where you had the in utero surgery until you deliver but Children's Mercy has the ability to bring me home to recuperate and deliver Clark here!

-We continue to ask for prayer that we are accepted by the Colorado fetal team for the surgery.

-We ask for prayers that Clark's legs keep moving!

Much love, Cyrena

Friday, March 7, 2014

Spina Bifida Myelomeningocele Information

Here is a great example of what Spina Bifida Myelomeningocele is and how it affects our little guy. This picture also shows how the prenatal surgery will help decrease the chance of him having life long complications.


Here is a video that helps explain what the fetal surgery can do and how they perform it. We heard back from Children's Mercy and are meeting with the KC surgeons on Tuesday, March 11th to go over what to expect when we get to Denver. We still aren't 100% accepted for the surgery but everything is looking good so far. We continue to ask for prayer that we are accepted!

Thursday, March 6, 2014

MRI Results

The results from the MRI were not what we were hoping to hear. We are looking at the most severe case of Spina Bifida, meaning the spinal cord is exposed. Right now we are waiting to hear back from a doctor in Colorado who will tell us if the baby and I are accepted for prenatal surgery. We ask for prayer that we are accepted as this surgery would give our little man the best outcome we could pray for.

Monday, March 3, 2014

News From Our Ultrasound

Our hearts are heavy as Cameron and I found out that our sweet baby boy has Spina Bifida. We meet with Children's Mercy tomorrow for an MRI. This MRI will tell us the severity and location of his opening. We ask that you join us in covering our sweet boy in prayer.