Monday, December 29, 2008
Wednesday, December 24, 2008
Yesterday, Scott, my mom, Hanna and I got to tour the NICU where Hayden will be transferred after his birth. The hospital is just one year old and the rooms are very comfortable. Each baby gets their own room where parents can have privacy with their infant as opposed to being kept in the traditional busy NICU bay with a bunch of babies. We were introduced and met many nurses and staff. I am attaching a link to virtual tour the hospital:
We think that I will be kept 5 days at Seton Hospital while Scott and Hayden will be at Dell for Hayden's surgery(ies). Their is a private nice room in the NICU where Scott will be able to sleep and stay the night with Hayden while he is recovering. Following that, we are anticipating that Hayden may have an average stay of 2 weeks.
It was very comforting to have the tour of the NICU where I trust he will be taken care of in my absence when he is transported. It was also great for Hanna to see the fun sibling things for her to do at the hospital when she comes to visit. She had a really fun time.
We also want to welcome anyone who wants to visit. There is a great family and friend lounge right along side the NICU and we can have 3 people in the room at any time.
Next week we meet again with Hayden's Neurosurgeon to discuss when he will be delivered in February and what surgery(ies) he will perform shortly after his birth.
This Christmas Eve, we wish all of you to feel the love that God had for us by sending us our Savior, Jesus Christ. We continue to believe in miracles and thank you for your continued prayers on Hayden's behalf.
Thursday, December 18, 2008
Sunday, December 14, 2008
I have posted Becky Etchell's blog since it is public to see how normal and happy her family and son are. Her experiences after giving birth is what I have been told to expect for the early days after Hayden's birth.
We met with the team of doctors and nurses from Seton last week and it was a great meeting. They showed us the new delivery wing that will open this week. I will be there delivering Hayden via c-section sometime the last week in February. From there, he will be transported to Dell Children's Hospital for his surgery(ies), where Scott will be with him while I am recovering at Seton. We are still not sure what his outcome will be or how long he will have to be at Dell. We know that wherever he is at home or for an extended period at Dell, he will be taken care of.
Next up, we make an appointment with Dell to meet their staff and take their tour. I already have an in with my good friend from church working in the NICU, Lei.
Monday, December 8, 2008
We will have an full tour and meeting with a team of doctors from Seton medical center this Thursday to tour their NICU and to see where my surgery will be performed. I also got a referral to talk to two moms with kids that have Spina Bifida and live here in Austin. Very different outcomes but both offer me a lot of hope.
Sunday, December 7, 2008
Tuesday, November 18, 2008
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Friday, November 14, 2008
Because of the excess blood in Hayden's brain we will not be proceeding with the study and pre-natal surgery. Due to the strict criteria, this finding excluded us from the study. This has been a very hard decision for us to weigh, whether or not to have the experimental pre-natal surgery if we were selected. We truly feel that this was us receiving revelation from God and all of our prayers were answered. We did not have to make the decision, he made it for us and for that we feel very blessed and our burden to make such a decision has been lifted. This would have been one of the hardest decisions we would have had to make in our lives. As parents we want to do everything possible to help out our children. Hayden knows this and I know he feels everyones love and support. We also find comfort knowing we have seen the best and done everything we could. He is our special child of God. All the doctors were so encouraging, hopeful and things are looking promising due to Hayden's leison level and moving legs. We will be flying back to Albuquerque Saturday afternoon and will fly back to Austin on Sunday morning.
Everyone's thoughts and prayers have been felt while we have been in Austin, Albuquerque and San Francisco. We will be glad to be home this Sunday.
Blessings and love to all. We want to thank everyone for their prayers, love, support and strength during this time. We feel very empowered with the knowledge we have so far from all the meetings we have had from the MOMS staff at UCSF. They are truly an amazing team and we are so grateful to have met with the best doctors and caring nurses in the world.
Thursday, November 13, 2008
We met with each doctor in the following videos:
After a quick break for lunch I had another hour long Fetal Echocardiograhm. This was our best news by any doctor thus far where we were told that Hayden's heart is perfect. We ended the day speaking with a 20+ year Spina Bifida Clinic Coordinator who will be available to us for continuing questions and support groups following Hayden's birth regardless if we participate in the study.
Tomorrow is our big decision day after having a 2 hour MRI starting at 6:30am. It is still uncertain if Hayden will qualify for the study or not based on some new unfavorable findings in his brain. We will meet with the Hayden's Fetal Surgeon, the high risk OB and finally the Social Worker before our decision is made at 12:30.
We are seeking inspiration and revelation to add to all of the knowledge we have been given and weighing those risks to possible rewards. It boils down to if the possible benefit of Hayden not having a brain shunt is worth the possible risks of prematurity and surgical risks for me.
Though this trying time, we have felt lifted by remembering back to each person's expressions of concern and hope through phone calls, e-mails and prayers.
On Wednesday, we flew into Oakland around 10am and drove directly to UCSF to meet with many people. The cab dropped us off in front of the hospital and it felt so unreal to be there. We found our way to the special offices for the Fetal Treatment Center and promptly made introductions at 11am with the wonderful Nurse Study Coordinator. We were taken into a conference room where doctors made appointments with us and came to meet us. I couldn't believe we weren't waiting hours in a waiting room for doctors. It was very special VIP treatment.
We met with the world's first female fetal surgeon who happens to be the Principal Investigator for this MOMS Study. She answered many of our questions and was very thoughtful and honest. We then met with another part of the team, a high risk OB, who explained her role and the risks to the mother. We ended the day exausted with information and spoke with a Neonatal Intensive Care Unit (NICU) Social Worker along with a Neonatologist who talked to us, encouraged us to keep our spirits up and took us on a tour of operating rooms, and the NICU.
We ended the day on information and emotional overload. We went back to our hotel took a nap and went to a wonderful sea food dinner on Fisherman's Warf and dessert at Ghirardelli lifting our spirits.
Thursday, November 6, 2008
Scott and I will be making a prayful decision and again are so thankful for the support of our family and friends. We will be staying at the Hotel Majestic for the consultation and if longer term plans are made, we will be at the Ronald McDonald house near the hospital.
Wednesday, November 5, 2008
Today we received the news that we will be going to San Fransisco to be examined by the staff of doctors at University of California San Francisco.
http://fetus.ucsfmedicalcenter.org/myelomeningocele/ - see favorite web links.
It is still not determined if we will meet the criteria of the study, but the doctors in San Fran will have the final decision. We may be leaving as early as Saturday and stay as long as 3 months. Travel, stay and medical appointments have not yet been made.
Scott and I have not yet made the decision if we will go forward with the surgery. We plan on searching out the best answers to our questions, pondering on our decision, and praying to see if it is God's will.
Our gratitude goes out to our family that will graciously be taking care of Hanna during this time and their willingness and love to support us in our decision. Thank you to all of you that have helped in bearing our burdens. If it were not for the willing support from our family, the study wouldn't be a possibility.
All of our love, Scott, Hanna and Adrienne
Monday, November 3, 2008
Saturday, November 1, 2008
Scott and I have been overwhelmed by the outpouring of support that we have received. We thank all of you who have offered prayers on our behalf and who will participate in praying and fasting for Hayden this Sunday.
The past two weeks have been filled with many educating moments. Within the first week of learning of Hayden's birth defect, we worked dilligently at informing family and scheduling specialist doctors apointments. This week we spent every day with different or multiple doctors while Hanna was cared for by many friends and family. After gathering as much information as we possibly could, and working towards getting accepted into the MOMS Spina Bifida Study, we believe that we should learn by next week if Hayden is a candidate for the study.
All of the doctors that we have meet with have been wonderful and supportive of us. They are the busiest specialized group, but have made us every accomodation to see us quickly to educate us and then passing information onto the MOMS study. Knowing that they are here to support and work with Hayden after he is born gives us a sense of gratitude to live in a city this size that has a special Spina Bifida Clinic.
Emotionally we have at many times been overwhelmed and felt powerless. The love and support from others has lifted us up. Hanna is the greatest joy in our home and helps to remind us of all of the happiness that Hayden will contribute to our lives.
All of our love, Adrienne, Scott and Hanna
Tuesday, October 28, 2008
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.
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
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
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
Monday, September 29, 2008
Wednesday, September 24, 2008
Can you sing along...1) it's the eye of the tiger...2) west side of Philladelphia born & raised on the playground...can you do more. I just couldn't get the songs out of my head.
Anyway, when we got home, we actually did a Rocky marathon and watched all 6 movies! Can you think of any other film that went on to do that many subsequent movies? No wonder I was teased for so long in my childhood. Yo Adrienne never wore out. If you don't recognize this picture from the Rocky movies, maybe you need to borrow our series.