We're going home

We have been here in San Francisco for three days working with specialists on the possibility of participating in a study. As it turns out, we did not qualify for the study. While we were here we did an ultrasound, an echo of the baby's heart, a fetal MRI and met with many, many specialists. The ultrasound showed a curve in the spine right at the start of the opening of the spina bifida. The curvature is called a kyphosis (http://www.medicinenet.com/kyphosis/article.htm).

The doctors spent much time and energy in measuring the curve. To qualify for the study (which has very specific limitations or qualifications) the curve could not be more than 30 degrees. The baby's curve is like 40-50 degrees. It took them quite some time to come to an agreement on the measurments. So, luckily in the meantime we received a huge amount of teaching on spina bifida and on the many specifics of our own baby's problems from very experienced experts. We don't really feel disappointed. Ultimately we feel like we explored this as far as we could possibly go. We have made many great contacts here, and received free tests and consultation from experts. We now feel armed with great information and understanding and hope to put it to use in further decisions with Lily. Thanks for everyone's prayers and support. We love you all. We are going home tomorrow (and I get to see my children!!!).

One additional blessing to coming here to San Fransisco was that we got to receive help and support from two dear friends, Anne and Heather. They were both so sweet and helpful and really added such a familiar element to an unfamiliar and stressful situation. We feel blessed by their kindness and grateful for their support.

Obsessed with his pascifiers

Picture Updates

Here are some pictures to go with some past posts. I finally found my camera chord. =)Anna's first day of 1st Grade. Gotta love those two missing front teeth.

Fun at the zoo.

JoJo and Joel looking at the Elephants.

This picture and pose was all their idea.

Going to San Francisco

It is confirmed that Joel and I are on our way to San Francisco to the University of Califronia SF on Labor Day. This is for the last stage of evaluation for becoming a part of the study. Most likely we will be accepted into the study. At that point we will be able to make a final decision (to participate or not). This is after major testing on me and the baby, and lots of interviews with doctors, social workers, financial advisers etc. After saying yes, we will be assigned by a computer to either fetal surgery or post birth surgery. We will let you know what happens.

Interested in learning more about spina bifida? Here is a website with good information:

www.spinabifidaassociation.org

At this point I am just trying to enjoy time with my family before I go. Being chosen for fetal surgery will be hard on all of us. But hopefully it will be what is best in the long run.

On a lighter note, we went to the zoo today with the kids and had a nice time. Joseph is getting so much more coordinated and grown-up these days. The girls also got him saying "ma ma" and "da da" and "a-nna" and "hi-ya" in the car all the way to the zoo. He really hasn't said any specific words until this point. So it was very fun.

I also talked Joel into taking a big load of stuff to the dump this morning!! A very big accomplishment to get him to do it. I am so glad to get rid of that stuff taking up space on my back patio. Thank you Joel. =)

Thank you

Thank you to all who have expressed concern for us and for our baby Lily. I have really appreciated all those who have reached out to us in any form. Your prayers are working for us. Keep it up! =)

We got some good news about a week ago. The results from my amniocenteses came back clear. This just means that there are no additional problems. We feel very grateful. Many of the problems they were testing for had high mortality rates. So we feel much more optimistic about Lily's future although much is still very unknown.

Right now we are just working on follow-up testing. We are also looking into participating in a study where doctors on the mainland would do surgery on the baby in-utero. We are really excited about the possibility, knowing that this would not be a cure, but a possible help for more mobility for Lily. So we will keep you updated on that.

Otherwise life is going on and thank goodness we have our three beautiful children keeping us busy and happy. Anna has started school (1st grade), Eryn continues to stay home with me learning new things every day, and Joseph keeps us laughing and smiling with all of his funny ways.

I will post new pics of the kids soonish. Just wanted to post a little update for those anxious to know more. Love to all of you!

We need your prayers

This is a picture from our ultrasound of little Lily Ruth Kongaika. She is a girl. Eryn was the only one who guessed right (okay and you Kelly =) ). We all thought she would be a boy. We had our ultrasound almost two weeks ago and at the ultrasound we found out that our sweet baby has serious complications. She has spina bifida. This is a neural tube defect that happens in about one in one thousand babies in the U.S. There are varying degrees and hers appears pretty severe. The opening in her spine is large. Because of the spina bifida she is also suffering from hydrocephalus or water on the brain. The brain is being pulled down in the back and fluid is pooling there. Another complication from the open spine is that she has clubbed feet. This is due to the lack of nerve activity going to her legs and feet. We were told in the ultrasound that this is considered a high-risk pregnancy and will have to be closely monitored. I will most likely have to have a c-section close to my due-date (Dec. 23rd) and the baby will have to go directly into surgery.

We have felt very humbled by all of the news of our baby girl. We want so badly for her to have a chance at life with the fullest possible mental and physical capacities. And at this time we feel completely and deeply dependent on the Lord.

I had felt a certain urgency and spiritual prompting to have this child and before deciding to have her we fasted and prayed together to be sure it was right. After receiving an answer we felt sure it was what the Lord wanted for our family at this time. Considering all of this now we feel sure that the Lord is in charge and that He is going to guide our footsteps through this difficult time.

We feel so grateful to have so many friends and family members supporting us through prayer and fasting. I hope that we can continue to count on all of you for your support through your faith and prayers. We will try to give updates as time goes on.

Family Pictures from our Reunion

Mike's Family

Amy's Family

Emily's Family

Betsy's Family

Betsy's cute babies (not twins). I got to meet them for the first time! Aren't they so beautiful.

More and more pics from Utah trip =)

This is the only picture from our fun trip to the zoo with Jake and Liana and their families. We were soooooo hot that we stopped to eat cold things every so many animals. Here is Joel's brother Jake taking over the wagon since none of the kids wanted to ride.


The kids loved all of the Utah play grounds. We don't have cool stuff like this in Hawaii.

My parents have a little river that runs behind their house. So one day my girls sent rubber duckies down the river and had my dad catch them with a net. Very fun.

My mom is so great about playing games with the kids. We really enjoyed our time at their home.

More Pictures from our trip to Utah

All three of the kids got to ride ponies at Thanksgiving Point thanks to Grandma Smith. Joseph was very serious the entire ride. But I think he was enjoying it. The girls both seemed very proud of themselves.
Anna made some progress with some of her swimming skills at the many water parks. Here she is on a rest break with her cousins Jakie and Zion (Jake and Mandy's kids).

I met Izabella for the first time on this trip. This is Jake and Mandy's new baby girl. She is beautiful and very lovable.

Can you tell we are sisters??? This is my younger sister, Amy and I posing for a pic on her birthday.

Our trip to Utah

This summer our family took a long vacation in Utah. I also apparently (for those of you checking my blog more often) took a vacation from my blog. =) I am back and trying to catch up. Thank you for your patience.

We had a wonderful reunion on my side of the family with my parents and siblings up in Hobble Creek for a week. It was so wonderful to spend time with my parents again (just returned from their mission to Brazil) and all of my siblings. Although I was still pretty sick from pregnancy and very tired. So I did more napping than I would have liked. But thank goodness for my second trimester! I finally came out of it about two weeks into our trip.



The kids really enjoyed spending time with all of their cousins and friends. Anna and her cousin Mary Kate lost teeth at the same time and were visited by the tooth fairy together at the cabin.


We also got to take a great family picture together of just us. Don't be surprised if you get this in the mail this christmas. =)