Lily is Home

We were finally able to bring Lily home from the hospital after nine days of care. She came home on Christmas Eve and we were so happy to have her with us. So far she is a good baby that sleeps and eats a lot. She lets anyone hold her and her sisters just love the opportunity as well as her older cousins, grandparents, aunts and uncles. She has been surrounded by many loving hands since the moment she was born, so we feel very blessed.

Both of her surgeries went very well and we felt like she was always in very good hands. We now have the task of giving her good home and good medical care. She will need occupational and physical therapy for her lower extremities. She will also need to go to a spina bifida clinic on a regular basis where she will receive care from urology, neurosurgery and orthopedics. We are trying to care for her surgery sites by keeping pressure off of her back and keeping the other sites dry. We also have to empty her bladder every four hours in the day with a catheter. Despite her obvious disability in her legs and feet, she looks and feels like all of my other babies. She will need some extra watch care. But we are loving her and enjoying her and truly grateful that we have her in our family.

Thank you for your interest in her and in us. We have felt blessed by your prayers and I know that I would not have the strength and sense of capability that I do without those prayers.

Getting to know her big sisters

Anna and Eryn finally took the opportunity to hold their little sister yesterday. It was so fun. They both seemed very excited to be able to get closer to her.

Lily received her shunt on Sunday morning. The bandage on her head is covering one of her little incisions. She is doing very well and now we are just waiting for her breathing to stabilize (hopefully by tomorrow) so she can come home with us.

Lily Day 5

Mommy & Lily update

Mommy was discharged from the hospital Friday night and is recovering well. Mahalo to each of you who commented on the blog, sent emails, called, visited, sent flowers, and continued praying.

Lily is beautiful, sweet and very patient. Her dear nurses are remarkable and keep commenting on how wonderful she is to be with. Lily had the surgery on her spinal defect Tuesday evening and specialists are monitoring (tests galore) any swelling of her head or back to determine whether a shunt is needed. The shunt operation is likely to happen this weekend.

We hope to bring her home before Christmas!

Announcing baby Lily Ruth Kongaika

Lily Ruth Kongaika
Born @ 8:29am
6 lbs and 15 oz
18 1/2 inches

Happy 7th Birthday Anna

These are all of her Utah cousins lined up here with her at Jungle Jim's.

I can't believe I am the mother of a seven year old. Time really does fly. It seems like just yesterday when she was born and our eyes met for the first time. I felt such a deep connection to her immediately. That became such a great blessing for me, too because she was such a difficult baby. That deep mother/daughter connection really allowed me to love her unconditionally despite all of the screaming (on her part). =) She is so grown up these days. All of that is past and she has become a sweet, smart, helpful girl. We are lucky to have her strong and bright spirit in our family. Above are some pictures from our celebrations.

SNOW!

This was Joseph's first experience with snow. He was a little shocked, I think. Luckily he had his pacifiers to keep him company. =) There's also a youtube video you can click on if you scroll all the way to the bottom that shows him kind of wandering around trying to figure it all out.

A Warm Winter Day

The weather has been pretty mild since we got here, but Saturday was almost warm. =) It was crazy. Our kids played outside almost all day and some even took off their shoes. Above Anna and Eryn are playing with their cousins out in the backyard. They pulled out lots of blankets and had a great big picnic. Today on the other hand it is snowing, finally. I will post some of those pictures later.

Baby Lily has a Birthday!

I am excited to announce that Lily finally has a birthday picked out. I am set to go in for a c-section on Monday the 15th of December. Joel and I were able to meet with my new doctor here and get a tour of the facilities earlier in the week and we both felt great about everything. It is nice to finally see things falling into place for the birth of our baby and I am so grateful to have a date to plan for.

Please continue to keep us in your prayers. =)

Welcome to Utah

Aren't they so cute? It is so funny for me to see my kids in pants and socks and shoes every day. They are loving the cold weather and seeing family.

Thanksgiving Dinner at Mom and Dad's.

Saying goodbye to Grandma and Grandpa at the Airport.

Saying goodbye to dear neighbors who we will miss so much.

We have finally made it to Utah. Saying goodbye to friends, family, neighbors and ward members in Hawaii about killed me, though. It was so hard to say goodbye. I felt so grateful for the influence all had been on me and my family and I wish I had more pictures of the goodbyes. I also had a great baby shower thrown for me just before leaving. My good friends Candace and Jenn put that together as a surprise for me which was very nice. They also had everyone give gift cards which was very helpful for packing purposes. =)

Our flight turned out to be a great blessing. We had considered buying me a very expensive first class ticket, just to be sure I was comfortable. But decided against it because of cost. Luckily it didn't matter. The flight was only about half full and I got a whole row to myself. In fact my whole family got to really spread out and lay down for the night flight. So that was wonderful.

Joseph was sick for the flight and continues with some major coughing and now most of us are sick with some form of cough or sinus cold. Hopefully that will get better quickly!

My sister has welcomed us here with open arms. She and my parents have been working very hard to prepare a soft landing for us here and it is so great. She made her basement so warm and inviting for us as a result of a lot of hard labor on her part (setting up cribs and bunk beds, painting, cleaning, moving furniture etc.). She also put together a lot of clothes for my kids donated by ward members and friends. So we feel we are in good hands.

I have been so focused on moving for the past few months that I really haven't had to face what lay for me on the other side of this move. I will admit that I am back to struggling. My life looks sort of like this big gaping hole right now. But I am trying to just take things one step at a time and to not feel guilty about all of the support I am receiving. It's hard for me to not feel like I can do everything on my own and to rely on other people so much. But at the same time I feel grateful and blessed.

Leahi Swim School Fun

Anna and Eryn have thoroughly enjoyed their experience being enrolled in the Leahi Swim School. Both have made significant strides in the water and will dearly miss their super nice, local kine swim instructors, not to mention learning how to swim in an outdoor swimming pool. They are already talking about finding an indoor swimming pool somewhere in Utah to continue living up to the Kongaika name (Kongaika means "part fish" for those unaware). Above: The girls received Leahi Swimmer Medals on their last day.

Crafty Fun

My sister Amy created a new preschool blog. She majored in early childhood education in college, so she shares lots of great children's books, songs and craft ideas. Here's Eryn completing one of the crafts. We both had a great time. Thanks Amy! Here's a link to her blog if you are interested:

www.amy-fun4kids.blogspot.com

Sorry for the problems with the link earlier. The link works now.
Share it with whoever you want.

Big Change & A Big Blessing

Joel and I have decided that in the best interest of our family we are going to move to Utah. So when we go on the 24th of Nov. we will be going for good. It was a hard choice to make, for us, but we both feel really good about it. We feel more confident about the kind of family support and medical care we will receive there. We will miss our life here in Hawaii for sure, but it feels good to make a choice that makes sense for our situation. I look forward to living closer to some of you and especially my parents, my sister and Joel's brother and sister.

Because we are moving, we have been selling/giving away our stuff like crazy. We don't plan on taking anything but the irreplaceable. It is pretty sobering to look at all of the things you own that way. We really do keep a lot of things that we don't use or need. In that way it feels good to simplify.

Getting ready (with lots of help from good neighbors) for the big moving sale.

We decided to hold a moving sale last Saturday (Nov. 1st) just to get rid of our stuff. And as it turns out we were blessed by a very special experience. A very sweet neighbor of ours took it upon herself (after getting our permission) to create a fundraiser out of our moving sale. She passed out flyers to all of our neighbors inviting them to donate items to be sold, and for all of the proceeds to go to the Kongaika family (to help us with our move and medical bills for our baby with spina bifida). The neighbors were all very helpful and supportive as well as our ward members. Lots of people brought items to be sold for the sale, and more came to buy things in support of our family. The sale was very successful, raising a sizable amount of money for us to use toward medical bills. More than that, we felt overwhelmed and extremely blessed by the kindness and generosity of others.

Happy Halloween

Having fun at the trunk-or-treat with some friends.

Here is Anna at her school's Literary Parade. Every year her Kanoelani Elem. holds a parade on Halloween where the children dress up as a character from a book and then parade around school holding their book. I really love it. It is a great way to promote literacy and to put a more educational spin on Halloween.

Here are the kiddos. They had a nice Halloween this year. This picture was taken at a Halloween activity the week before Halloween. Eryn was a Dalmatian, Anna was Snow White and JoJo was Superman. Eryn's costume was a little too small, but she became attached to it so quickly and wore the costume so happily leading up to Halloween, pretending she was a puppy that I just didn't have the heart to return it.

Here is Lily Ruth at 28 weeks. We had a really nice ultrasound of her on Friday. The technician doing the pictures and measurements was so sweet and positive. Lily was putting on a little show just for us. She smacked her lips, yawned and grabbed her toes. We are in love with this precious little girl. Otherwise nothing to tell, except that the dr. is going to start keeping a weekly watch on her progress.

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.

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.