Having our baby in Utah

It is official. We are going to have our baby in Utah. It has been a long road to get to this decision. But we feel good about it. Thankfully, we will have a lot of great support there from both sides of the family. We will also have the blessing of working with more experienced doctors. We will be going as a family just before Thanksgiving. Please continue to keep us in your prayers. We continue to feel blessed by your support in this way.

As an example of your prayers working for us, I would like to share a small experience I had recently. The day before we left for California was a Sunday. I was feeling very nervous and anxious about everything, trying my very best to simply trust in the Lord. But I was struggling. During the sacrament I offered up a desperate prayer, "Heavenly Father, I am going to do this but you can't leave us alone. In the moment we have to make a decision, please do not leave us alone." As I sat contemplating, immediately I realized a hymn was running through my mind. And it was a specific verse of that hymn. It went, "Fear not, I am with thee. Oh be not dismayed. For I am thy God and will still give thee aid. I'll strengthen thee, help thee and cause thee to stand, upheld by my righteous, upheld by my righteous, upheld by my righteous omnipotent hand." As I read on, every verse of the hymn "How Firm A Foundation" seemed to apply directly to us. I went on to read the accompanying scriptures noted at the bottom of the hymn. One reads:

"And now my sons, remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation, that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fail." Helaman 5:12

Joel and I have had other quiet experiences recently where Heavenly Father's love and His awareness of our specific situation have been made know to us. These experiences continue to teach me that God loves each of us and knows each of us on such a personal level.

Love to you all!

Swimming Lessons!!

So. . . for a while now whenever we bring up the idea of baptism to Anna, her response has been something like "No way. I do not want to get baptized!" I came to realize that this is because she does not like the idea of having to hold her breath under the water. So, since she is turning seven soon, I decided it was time for some serious swimming lessons. =) So far both the girls are doing well and improving very quickly. Eryn is a little more nervous. You can see it in her face. But I am so happy that they can finally start to tackle these important water skills.

Pictures from San Francisco

I wish you could all see the Golden Gate Bridge in the distance in this picture. In person we could see it clearly. Very beautiful.

This is one of the views from the hospital. It's really a beautiful place.

Our amazing "support team" while we were there. Thank you again girls!

This is the street where our bed and breakfast was located. The whole area reminded me of scenes from the opening of Full House. Yes. I used to watch that show all of the time.

A little bit of Heaven

Last Saturday we took the kids to Ho'omaluhia Botanical Gardens. The whole day turned out to be heavenly. One of my favorite things about Hawaii is the beautiful, steep, green mountains. They are so beautiful! Ho'omaluhia is a perfect place to enjoy the mountains (without having to hike them =) ) in a quiet, tranquil setting. We had a picinic lunch and then fed the ducks at the lake. After that, we just took a walk around the lake in the shade of the huge trees. The best part of the day was my children's behavior. Anna was especially happy and helpful the entire day. It was one of those days where we got a glimpse of the kind of sweet, helpful child she has the potential to be. She was cleaning the house and making beds in the morning. Then she was sitting her little brother on her lap to help him feed the ducks. Holding his hand and carrying him around. The other two were just so pleasant and sweet. Joseph loved feeding the ducks and roaming free all over the place. No huge meltdowns from anyone. Yay! We love our little family and hope for more heavenly days like this in the future.

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.