11 Days with Kapono
Kapono was our third child. After 6 years since my son was born my husband and I wanted another baby. My pregnancy with Kapono came after having a miscarriage 4 months prior. My pregnancy went well, I felt great, I had comments on how I glowed, my weight gain was doing good, the routine tests the doctor did seemed to give no indication that Kapono was not going to be just the perfect blessing we had prayed for.
At 37 weeks, my doctor had me do a sonogram, it was then we found out we were having another son! We were so excited, I had a big hunch that the baby was going to be a boy, I set up his nursery with blue long before knowing he was a boy! I was just so sure. Well the sonogram confirmed it once and for all. There was no indication he had any problems. His size looked fine and the technician did not see any signs we would have to be concerned about!
At 38 weeks I started having contractions. I had contractions all day and knew the day had arrived. The contractions were as close as 5 minutes apart and lasting a good minute to minute and a half. We decided to call the doctor. Although the contractions were not painful, it was happening! We were so fired up!!! I grabbed my bag as well as baby's bag and we were off to the hospital, it was almost 2:30 a.m. At the hospital the contractions were coming but still I felt okay, I knew the baby would be coming fast, my 2 children I delivered less than 5 hours so I knew he'd be here soon!
Sure enough! At 6:33 a.m. on Sunday October 17, 1999 my son Kapono Gideon John Kamoku was born. He was 7lbs. 1 oz. and 20 inches long.
At first when he came out and was put on my stomach, he did look extra purple, but I had no reason to worry, Or did I? The doctor congragulated me and my husband and said "Good job Shelby, you have a healthy baby boy."
The nurse took him from me and the doctor started to clean me up and the nurse called him over, I began to worry. He came back and told me the nurse heard a heart murmur. Then again the nurse called him over to the warmer and they talked and the nurse took him to the nursery. The doctor talked calmly to me and said Kapono was being taken to the nursery to be monitored, but we did not have to worry. I still felt uneasy and worried, I sent my husband to call my pastor and they said a prayer immediately over the phone!
I was settled in my bed and just by looking at the nurses, I could see such pity on their faces they looked at me like "Oh you poor thing" I in return had no reason to worry, so I just prayed to God that my child would be okay.
Finally after 2 hours of waiting I sent my husband to the nursery to check on my baby, the doctors were doing x-rays on him because his color was not right and they were concerned on his condition. This is the beginning of the realization hitting me that my baby was really sick. When my husband returned he had such a straight face and he tried to smile as he hugged me and said it would be okay.
A nurse then came in to let us know Kapono was going to be intubated and needed to be flown to the island of Oahu to Kapiolani Women's and Children's center. I was frantic!!!This was not part of the plan! This is not what I was prepared for! I seriously thought I was having a BAD DREAM!!! Then my husband calmly spoke and told me "Shelby, the best baby doctors are at Kapiolani"
At 10:30 a.m. the nurse finally told me Kapono was stable but still on the shaky side, and if I wanted to I could go visit him. I jumped out of my bed and I refused the wheelchair, I just had a longing to be next to my precious baby. The nurse could not believe the strength I put out, but wouldn't any mother?
It was so hard to see my precious son intubated and with all sorts of tubes in him. He had IVs in both heels and an arm. I whispered in his ear and he slowly squeezed my hand. I just wanted to take him back in my room and hold him and nurse him like all moms do after giving birth! That was'nt going to happen though.
My parents and grandparents came to visit him, my older 2 children stayed home with a relative and they were told to stay home and pray because baby was sick. I kept talking to him and telling him I loved him and that he was so handsome! He did not open his eyes for me.
At 1:30 p.m. Kapono was flown from Hilo to Honolulu. The doctor let me out at 5:30 p.m. that same day with the agreement that I would stay home that one night and fly to Honolulu the next morning. I did.
On Monday, the doctors in Honolulu called me to get an okay to have tests done on Kapono, this special test was a cardiograph. I okay'd it and at that time the doctor told me that the x rays taken showed Kapono had what was called Hypoplastic left ventricle. I just kept saying to myself "This cannot be happenning!" But it was...
We made it to Honolulu and to the hospital and when we got to the neo-natal unit we were amazed by the amount of babies that were there. We walked up to Kapono's little bed and he still had all his IVs in. The doctors came to talk to us about the options we had with Kapono. He needed to have surgery, they were trying to control his blood sugar first, and the surgeon who would be the best to do the job was leaving town in 2 days. The doctors would not operate until he got a little more stable.
We prayed and prayed for guidance, we sat next to his bed and we talked to him. He knew we were there because when we would talk he would try to move, and the nurses would have to sedate him so that his heart would not beat too fast. He was such a cutie! He opened his eyes and looked at me and I knew he was fighting.
On Wednesday the cardiologist approached us in the Hospital cafeteria and asked if we wanted the surgery done that night, the surgeon could operate on Kapono right before his flight, but we needed to decide then! We said go for it and Kapono made it through the 3 hour operation. A shunt was placed in his heart to work kind of like the valve Kapono's heart was missing.
The shunt was working and we just needed to monitor his progress. The day after surgery was a rough day, the doctors were having a hard time keeping his blood presure up. They were loading him up with fluids and he began to get swollen. The doctors said that would happen due to the large amounts of fluid they were giving him and from the surgery as well. His skin was glassy looking and he was just so puffy. On Friday, he looked like he was making progress, his blood pressure was okay and the doctors were a little relieved.
My parents flew up to spend the weekend in Honolulu with Kapono. My husband flew back to Hilo for the day to pick up my 2 older children to come see their baby brother. It was wonderful! When my parents would talk to Kapono, he would move his toes and squeeze his fist, then the nurse would have to sedate him so he would'nt be too active.
When my children got to the hospital and saw Kapono, I knew they wanted to cry, seeing all those medicine being pumped in to him made them scared. Kapono loved it, I knew he was being strong and showed progress because they were there with him. My daughter read Dr. Seuss books and my son drew pictures to hang by Kapono's bed, it was such a great time. Kapono would open his eyes wide when he saw his older sister and brother, I cried because I knew he recognized them!
That weekend was the best progress Kapono had. The next week was dealt with keeping his blood pressure up again. The doctors could not understand why the medication was not helping.
By this time he was 10 days old and he weighed 12lbs! He was just so swollen I felt so sad for him to be like that. >B>All through this time I could not even hold him. It was killing me that I had not held him yet.
It was on a Wednesday, that an x-ray was done and they found a little hole in his intestines, it was a good sized hole and in an area that the doctors did not want it to be. It was then explained to us that all the time through surgery and recovery, Kapono's body was undergoing stress, this stress led to a cist in his intestines which led to a hole which was causing air to go in to his stomach and which was turning in to an infection. The neonatologist said we could do surgery if we wished, but Kapono was really weak. We wanted to try and after talking to the surgeon we knew Kapono's recovery was in God's hands. The surgeon said he was just too weak and she did not want to do the surgery, she did'nt think he'd make it.
We called our family in Hilo that day and decided that we'd take him off all medication and the ventilator. Some of our families flew to Honolulu to support us. The neonatologists cried with us and were just great!
When we removed the ventilator and the IVs, Kapono was still breathing. The nurse handed him over to me and for the first time since his birth I got to carry my son! We dressed him in a hospital shirt and wrapped him snuggly and put a hat and booties on him and I held him close to me, He was weak and he did not open his eyes but I loved him all I could. I talked to him and rocked him. It felt so good!
He got passed around to our family members to hold him and when I got him back, the nurse checked for his heart beat and he still was with us. We took pictures and I kissed him. He was with us for 45 minutes before his heart stopped. The day he went home to be with the Lord was October 28, 1999.
After Kapono passed away, we made his arrangements and we had a funeral service for him. Attached is the poem my 8 year old daughter wrote and read during the service.
At the service over 200 people attended, my pastor did an altar call for people who did not know Jesus to accept him in their hearts. Praise the Lord, some relatives I have that did not know Jesus got born again. Kapono was such a blessing to those who allowed him to be.
My husband has a few relatives that act as if Kapono never existed! That hurts so much, they never called us and they did not come to the funeral, they speak highly of my sister in-laws 6 month old daughter in front of us and act like we never went through what we did.
If anything at all, I'd just like people to realize how special these babies are. I just don't like it when people assume to just forget, when instead the best thing to do is distinctively remember!!!For memories are all some of us families have.
"Kapono's Poem by: Big sister Kaori, eight years old" by Kaori (12/24/99)
Shelby
Kapono Gideon John Kamoku
10/17/99
Died soon after birth/ Hypoplastic left ventricle
Hilo, HI
12/24/99
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~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~
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Georgia
My Daugther Georgia was born on 6th April 1999. She later died at 23 days old on 29th April 1999 after complications after open heart surgery. The loss of our Daugther due to a heart defect has left us very nervous about the birth of our new baby in March 2000. Although
we have had tests done to find any abnormalities it does not take away the fear that maybe it will happen again. Here's hoping that all
is well.
Kylie
Brisbane, QLD Australia
1/2/00
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Hello...
My son, Wyatt Sawyer, was born December 22, 1998. He was born with a heart defect called Coarctation of the aorta. He had heart surgery when he was one week old and passed away from pulmonary thrombosis when he was two and a half weeks old... His Anniversary date is in two days... I miss him so much.... I want all to know that my heart breaks for everyone of us and I pray that we all can find peace.....
MyAlexis94@aol.com
Amy
WA
1/6/00
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Georgia was to be our fourth child and last.
The pregnancy was fine execpt all the false labours until she arrived in such a hurry. We were so happy that we had another little girl to love but the problem was she was blue. We panicked as all parents do but the doctors said it would be ok.
Georgia spent four days in the special care nursery with suspected wet lungs and sepsis. We were glad when she was released into the ward with me. The next day at five days old Georgia was allowed to come home, the other kids had put up welcome home signs for us. The next couple of days were settle in days then we went shopping when Georgia was seven days old. That was the last time she saw the outside world.
Midnight 13 April 1999 we were woken up by Georgia screaming in pain, I changed her only to find purple blotches all over her tiny body. We made a mad dash to the Hospital to be told that something may be wrong with her heart. Georgia was transferred to another hospital and it was confirmed that she had Transposition of the Great Arteries, hypoplastic aortic coarcation, patent ductus arteiosis, muscular VSD and a small patent foramel and ovale. At the time we didn't understand any of this only that Georgia had major Heart problems that required surgery.
On 16 April 1999 Georgia had her surgery with one of the best surgeons in the country doing it. We almost lost her that night as they could not get her off the by-pass machine, our prays were answered when they told us she was back in ICU.Georgia's recovery was slowly improving day by day and our hope's were finally coming back but then the doctors told us our final nightmare. Georgia had contracted a virus called Candida. They did blood transfusions of platlets and gave her antibiotics but in the end she just was not strong enough to pull through. On 29 April 1999 just 23 days after Georgia's birth we lost our little girl to the angels.
Just her Dad and Mum were with her just like when she was born. A small tear came from her eye before she left us.
We visit her at the crematorium monthly and now her little brother or sister is on the way. I asked her to look out for our new arrival and see him/her safe into this world. Nothing can take Georgia's place or her memory from us.
I have spent the last nine months finding out everything I could about Georgia's condition and what could have been done to find the problem when she was first born. I am taking legal action against the hospital she was born at as they should have found my daughter's Heart condition while she was in their care. Georgia's death has given all of us stength and courage and we will not lose that ever.
Kylie
Georgia Sylvarna Henriette Nielsen
Other
Brisbane, QLD Australia
1/10/00
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