Tuesday, October 28, 2008

Moms Spina Bifida Study

We have been very busy scheduling and seeing doctors. I had an amniocentesis today (and survived:)). This is the last bit of information that our study coordinator from George Washington University should need to make the decision if we qualify for the study. We should have the amnio results at the earliest by Friday.

Prognosis: Hayden will be 22 weeks along on Wednesday. His opening on the spine is at L5 or S1 which is at the sacrum. His brain is swelling but he does not have club feet. If we qualify for the study, we need to have a further evaluation of 2-3 days at the University of California in San Fransisco where the surgery would be preformed before gestation is 25 weeks. We would need to move to SF from the time of the surgery until gestation is 37 weeks, mid to early February, for the second c-section. http://fetus.ucsfmedicalcenter.org/myelomeningocele/

The study would pay for the best care in the country, for our travel to SF, a place to stay and for all our meals. However, they discourage us from bringing Hanna due to the need for bed rest following surgery and the need to schedule many doctor follow up appointments.

Once per month, our church asks its members to participate in a 24 hour purposeful fast to pray for any special needs for yourself or for others. This Sunday, we will be participating in a fast with the prayer that Hayden be granted the opportunity to receive the in utero surgery that may help his little body to heal. We are asking that if you are able to fast, that you would also pray for our baby Hayden and his participation in the study.

The in utero surgery is very risky but it is thought that it may 1) reduce the chances of Hayden needing a shunt in his brain and 2) protect his nerve endings on his spine from further damage.

In addition. I am posting this short story and photo of an operation done at Vanderbilt.

The picture is that of a 21-week-old unborn baby named Samuel Alexander Armas, who is being operated on by surgeon named Joseph Bruner.The baby was diagnosed with spina bifida and would not survive if removed from his mother's womb. Little Samuel's mother, Julie Armas, is an obstetrics nurse in Atlanta . She knew of Dr. Bruner's remarkable surgical procedure. Practicing at Vanderbilt Univ Med Ctr in Nashville , he performs these special operations while the baby is still in the womb.During the procedure, the doctor removes the uterus via C-section and makes a small incision to operate on the baby. As Dr. Bruner completed the surgery on Samuel, the little guy reached his tiny, but fully developedhand through the incision and firmly grasped the surgeon's finger. Dr Bruner was reported as saying that when his finger was grasped, it was the most emotional moment of his life, and that for an instant during the procedure he was just frozen, totally immobile. The photograph captures this amazing event with perfect clarity. The editors titled the picture, 'Hand of Hope.' The text explaining the picture begins, 'The tiny hand of 21-week-old fetus Samuel Alexander Armas emerges from the mother's uterus to grasp the finger of Dr. Joseph Bruner as if thanking the doctor for the gift of life.' Little Samuel's mother said they 'wept for days' when they saw the picture. She said, 'The photo reminds us pregnancy isn't about disability or an illness, it's about a little person.' Samuel was born in perfect health, the operation 100 percent successful. Now see the actual picture - and it is awesome... incredible... and hey, pass it on. The world needs to see this one! Don't tell me our God isn't an awesome God!!!

Trip to Long Beach

We were blessed to have timed the CA trip with Hayden's health news. It was a great relaxing visit. We were able to do many fun things with Hanna to help keep our minds lifted. Mom has posted some of the videos she took of her with Hanna and I will still work on posting ours.

It was really warm while we were at my mom's house, so Hanna was so brave to run into the ocean. I had to hold onto her very tight because the waves were so big and she didn't care if they washed her away.

We were planning on and were actually disappointed when we learned that Disneyland was sold out for their Halloween events. However, Mom found many great events in Long Beach. We went to the pumpkin patch where Hanna got to ride a pony, the train, drive her car and pet animals at the petting zoo. She also got to go to the Halloween event at the aquarium where they had a parade on stage of the children in their costumes. We are SURE that Hanna won the contest of cuteness. On Sunday we also got to do to the dog Halloween parade. Hanna just loved it and wanted to hug and ride all the dogs.

Monday, October 20, 2008

Spina Bifida

Click on pictures to see larger detail.

Today we had a long ultrasound. It was shocking and sorrowful to find out that our baby boy has the birth defect spina bifida. We learned this because the left ventricle of the brain was slightly large at our last ultrasound so we had a follow up. The specialist confirmed ventricle growth.

We have an appointment with a pediatric neurosurgeon and a neurologist in a week. The simple diagnosis is fluid and swelling of the brain with a hole in the spine. We were recommended to look into a study of surgery on the baby before birth (usually the 25th week and I am 21 weeks) or the immediate surgery on the brain and spine after birth.

The doctor recommended best websites are:

We did get some beautiful pictures.  Right now the baby is the perfect size for gestation and the legs, feet, hands, arms and cute face all look good.

Thank you again for your silent prayers. We will be asking for God's mercy and a miracle to guide us to heal and help our baby.

Sunday, October 12, 2008

We're Having a BOY!

On Friday, 10-10-08, we found out we are going to be blessed with a little boy! We were told at 14 weeks that they saw boy parts but not to get too excited about it. Well now we have it. The dark circle below is the liver. We get another recorded ultrasound on 10-20.
We are pretty sure about the name Hayden Thomas Trigg. Hayden was Scott's great gramps and Thomas is my gramps.

Also, CONGRATULATIONS to momma and dadda McDougald welcomed little baby Samuel on 10-10!

Monday, October 6, 2008

Sarah visits from Pueblo

My good long time friend Sarah Bruestle came to visit us over the weekend on her way to SA for a business trip. We hit the touristy attractions of Oasis and other spots. I was so thrilled when I finally got someone who wanted to go canoeing with me and Sarah was the perfect person. I had a blast paddling with my big belly and seeing the city from the river.