Celeste with her favorite Nurse, Mike, at LDS Primary Children's Hospital. She had a yeast infection in her belly and it had infected her shunts. Celeste has Congenital Lyme disease, Hydrocephalus (water on the brain), Dandy Walker Malformation (cyst and malformation of the fourth ventricle in the brain), and Failure to thrive. Celeste is six and a half and weighs 40 lb, finally. She weighed 10 lb. at a year old so you can see she has come far with her weight. Myesha is her identical twin.





Favorite Color:

Blue

 

Favorite Movies:

Care Bears

Cats and Dogs

The Big Freeze (Land Before Time

All Dogs Go To Heaven 2

 

Age:

6

 

Medical:

Dandy Walker Malformation

Hydrocephalus

Failure to thrive

Gastric Esophogeal Reflux Disease

Congenital Lyme Disease

 

Favorite Foods:

Pizza

Cheese Burgers

Spaghetti and Meatballs

Bagels

Raman Noodles

 







Celeste has had a hard journey thus far. She was born with Dandy Walker Malformation (a cyst form in the fourth ventricle of the brain) and Hydrocephalus (water on the brain). She has two shunts placed in her brain for this. The end of the shunts (catheter) are just above the heart (this is where the fluid from the brain goes and the heart just pumps it out and distributes it through the body). Later, Celeste was also diagnosed with Failure to thrive. At one years old she weighed 10 lb. Celeste has so far been through 22 surgeries, mostly shunt related.

Celeste also has Congenital Lyme disease (possibly causing the malformations in the brain. She has a hard time learning new things. Many of the symptoms she still exibits is Fatigue, memory Problems, stuttering and voice harshness. She is now complaining every day of back and neck pain. These are just a few of the symptoms she has. If it isn't to much, please donate money to the Tick Borne Disease Center so she can continue to get free medical care.





DEAR JOURNAL,


Life can deal you an interesting hand. Many blessings and many trials. I many times have told myself that I need to write things down right soon so that my children will know how I felt during my pregnancy's and about their birth.

Myesha and Celeste (Our Twins) were a really hard pregnancy for both their Mother and their Father. But what a blessing to feel the spirit so strongly there to guide us. We would have never made it without Heavenly Father and Mother's help. I remember a sacred experience that happened on March 4, 1995 on my way to work at Idaho Falls Group Homes there on Belin Road. I felt the presence of the Holy Ghost and I believe my girls were there too. I felt strongly that there were special spirits ready to come to the Earth soon. I felt that way for quit some time and at times it scared me. Darren did not seem ready: as far as that goes, I was not ready either. But there were two beautiful girls who were. I took the birth control pills hoping soon Darren would let me know when. The birth control pills made me very moody and violent. Many a time, Darren had to duck, and dodge objects, really I only threw pillows. I'd get angry and then I would cry it seemed for hours and hours. Finally I went to the doctor. Dr. Johnson quickly took me off the pills. He told us to either start our family or use condoms. Darren and I don't believe in using condoms for us. So a month and a half later we were pregnant with our twins. Somehow Darren and I felt even before I was pregnant that we would have twins. At the beginning of the pregnancy it went fairly well. I had the usual pregnancy problems. I felt green many a time. I told Darren before I got pregnant that we would have troubles with them. The Lord I believe always let me know certain things to prepare me. Then I thought where I was doing so well that I could have been wrong. I need to learn to trust my feelings. At 18 weeks gestation we had the first of many series of Ultra Sounds. They found out that we were indeed pregnant with twins. What joy Darren and I felt, joy soon turned to fear and uncertainty. They also found that we had Twin-Twin Transfusion Syndrome. One baby was so much smaller then the other (half the size of the bigger one.)

November 6, 1995: We went to Salt Lake City, Utah (University of Utah Hospital) under the direction of my OB-GYN., Dr.Hall. Dr. Silver studied my Ultra Sound and at first they felt they were in the same sac. That brought a new fear of Babies strangling themselves with each others umbilical cords. The smaller baby (Celeste) had littler fluid around her. They tried to extract some fluid (amniocentesis). They had to quit after three times because of small contractions. They gave me medications to stop the contractions. This was a start of three and a half months of trial. We decided to stay in Salt Lake City, Utah and receive treatment from Dr. Silver.

I received many amios, Ultra sounds, non-stress tests, and many other treatments. Elizabeth (Cousin) and husband Bill were kind enough to let us live with them for a while, which they will surely be blessed for. We grew very close to them and enjoyed our time with them. Dr. Silver did discover that the babies were in separate sacs and finally was able to get some fluid from around Celeste. That is how we found out we were having girls, it also showed Celeste appeared to have no mental or physical retardation; which they were worried about. They gave us several options to try and correct the Twin-Twin Syndrome. One was to go to Wisconsin and have a laser surgery done to try and direct more nutrients to the smaller baby. Second was to extract some fluid from the bigger baby and hope that when the fluid accumulates that it would go to the smaller baby. Third was to reduce ourselves to one baby to give the bigger one an almost 100% chance of living, that choice was never a choice for us. God gave us two babies and we were going to keep two babies. Fourth was to do nothing and just to observe and put the rest in God's hands. We chose the fourth. What faith Darren and I had to have. We knew the Lord was there and would do his will. We learned to accept his will. I remember the sweet spirit that accompanied me during the hardest times and what a wonderful supportive husband I had. Celeste also decided to be breech, she liked to cause me pain on my right lower ribs. Myesha liked to be against my left hip. We knew what child would have what name. The smaller one was going through much harder trials so we gave her the name Celeste-short for Celestial. We really like the name Myesha, thinking we made it up (It is an Arabic name. What a wonderful way to fight prejudice) We gave it to the bigger baby. At 26 weeks gestation they found out Celeste had Dandy Walker and Hydrocephalus. We had felt all along that there was something wrong with the smaller baby. We decided we would accept and love our child any way she came to us.

On November 11, 1995, we had a wonderful revelation given to us in the Bountiful, Utah Temple. We were comforted in knowing both our children would live. The Celestial room was a wonderful place to be. The spirit stayed with us throughout the rest of the day. The Bountiful Temple holds a special place in our hearts, which is where our first official date was. We went to the open house of the Temple on November 12, 1994. That is also the second day of our meeting one another. In January 1996 they found sugar in my urine. I had to test for Gestational Diabetes. More blood drawn and an awful sugar drink would tell them if I had it. The test came back just a little high. At the end of January they discovered protein in my urine and a high blood pressure so I spent a few days in the hospital for a 24-hour urine test. And I was also told to stay on bed rest for the remainder of my pregnancy. I went home and later returned to the Doctor's office with high blood pressure again. I was invited to stay for the remainder of my pregnancy. They really watched my pre-eclampsia (Toxemia) close. During my stay in the hospital they did many more Ultra Sounds to check out Celeste heart. They were concerned at some of her non-stress results. They felt the heart rate was not up as high as it should be. Thank goodness the heart was just fine.

Bed rest was boring. My wonderful roommate Carla kept me company. Darren had to work often so he couldn't always keep me company. We talked about the gospel often. She is not LDS. She was not interested in the gospel but she enjoyed talking about religion and so did I. On February 13, 1996, I began to see black spots caused by the pre-eclampsia. So I was no longer to take my 15 minutes wheel chair rides or to join the girls at the Tuesday lunch in. They also took my roommate away. They needed her to interpret, Spanish, for them. I became very depressed. I had no one to talk to and the next day was valentines day. Darren would only be able to see me for a very short time. Pre-eclampsia can be worsened by stress and depression. Valentines came and I was very sick. Dr. silver decided I would not be able to last much longer, so the girls were to be born by Cesarean on February 14, 1996. The spirit was so strong there was no fear only happiness. I knew everything was going to be all right. Darren looked so funny in the surgeon outfits. They gave me an IV and Magnesium medications, that stuff made me hot and uncomfortable. The Spinal was weird. I now know what it is like to be a paraplegic. A curtain was put up between me and the babies, so I could not see them. How wonderful it was to hear them cry, it is not quite as wonderful now though, LOL. Celeste being the littlest let out the biggest scream, she still does that today. Myesha was born first at 10:59 A.M. at 4 lb. 8 oz. Celeste at 11:01 P.M. 2 lb. 3 oz. Celeste was still in her sac when Doctor Silver pulled her out. He popped the sac outside of the Uterus, many nurses thought that was so cool. There were only about 40 medical students present at the birth, since I had a rare condition. My recovery was quick. I did not get to see my babies until four hours later. What sweethearts. We had covered the first milestone together as a family.
February 19, 1998



Update!!

 







Updated on 05/11/2005

Home