Tuesday, November 18, 2008

Welcome To Holland

My mom sent me this wonderful story that I thought others might like as well.

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

Coming Home from San Francisco

Today we had several long meetings and tests with the doctors at UCSF Medical Center. After the 3 hour MRI and second ultrasound, the Chief Neurosurgeon and Radiologists confirmed that there was another finding with Hayden that is unrelated to the Spina Bifida. The ultrasounds concluded that there is excess blood in Hayden's brain that could have been caused by stress. However it is not a blood clot, hemorrhage or pooling of blood. The doctors believe that the blood will disappear in days or in the next week and we are not to be overly concerned about this finding.

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

MOMS consult update Thursday

After a good nights rest, I went into an hour long special ultrasound where I was examined by a radiologist. We then met with the Director of the Fetal Treatment Center who gave us the final diagnosis for Hayden's type of Spina Bifida, myelomeningocele. It was determined that he does have the most sever form of the defect. Although he does have the defect, we are hopeful due to his legs movement and lack of club feet, a sign of sever nerve damage.

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.

MOMS consult update Sunday-Wednesday

I thought that many of you would like to know what has taken place over the past few days. Last Sunday, we flew to Albuquerque to drop Hanna off with her gracious grandparents. She thought she was having one big party. We got to spend some wonderful time with Kristin, Barry, Chase, Ben, Kara, Ralph and Gwen. It was a much needed distraction to be with them and to feel their love and support. Hanna was staying with the Hogge family and loving it when we left on Wednesday morning.

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

Going to San Francisco

Timeline: We are leaving for San Fran via Albuquerque on Sunday the 9th. We will stay with Barry and Kristin until we leave early Wednesday morning. We will have our two day consultation the 13th and 14th with many doctors, the NICU as well as a physical, a MRI, an echo and a in depth ultrasound. We should have our decision made if we elect to go forward with the surgery and are accepted or not by the 14th. If we do have the surgery, the date is set for the 17th, Monday.

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

Answer to Fast and Prayer

Our gratitude goes out to those of you who have fasted and prayed on our behalf. Sunday was an extremely spiritual day for us. We have felt the Spirit of God comfort us on our journey and lighten our worries. I testify to you that through fasting and prayer God has listened to and answered the concerns of our heart.

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

Saturday, November 1, 2008

Spina Bifida Update

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