It was one week ago that my phone rang. And my life changed...again.
Allison Hope Yayeko Ka`olinanahenahe was born on July 28th, shortly after noon on a Wednesday. She was a spitfire, a ball of personality weighing in at 1 lb 12 oz. People kept asking why we called her a spitfire but everyone who got to meet her quickly understood why. She was our little scrappy fighter.
She always quick to let people hear her displeasure. And she loved sleeping with her hands by her face. This was taken two days before she passed...they had just moved her up to a newborn sized diaper.
It started long ago, when we first found out that we were having triplets. Our first visit to the specialist showed that at 10 weeks, Allison was already measuring days behind her identical twin. The doctor was very concerned at this growth discrepancy appearing so early on. It could be an indicator of something more serious. We were told the option of selective reduction, but we refused. Instead, we watched as Allison continued to grow...always far behind her identical twin and fraternal sister...but she just chugged along growing at her own pace.
At my 15 week doctor visit, the doctor spotted an abnormal growth at the base of Allison's spine. He said the most two likely options were cerebral palsy (she would most likely end up in a wheelchair) or it was a tumor. I braced myself but at the next visit, the growth was gone. he couldn't find any sign of it at all...and it never appeared again. At the 17 week visit, she and Rory both displayed low levels of amniotic fluid. By the next appointment, their levels were fine. At 20 weeks, we discovered that Rory had a blocked aortic valve. There was a chance that Rory would pass away before birth. Because Rory and Allison were identical twins and shared a placenta, if Rory passed away, we were given a 30-40% chancr that Allie would too. Even if Allie survived, there was a 50% chance that she would suffer sever brain damage. Nervously, the doctors watched every week but Rory was strong and she was looking out for Allison. Our girls were amazing fighters. And in the end, it was Allie who decided it was time to venture out into the world.
Allie with her loud battle cry and superstar nickname "Astro." She overcame so much, I never thought for a second I would lose her. I just marveled at what life she would lead, what story God had laid out for her. The little imp showed off by being first at everything. It was Saturday night, when Scott and I went in late at night to kangaroo/skin to skin holding with the girls. I had Allie and the nurse had her turned so her face looked up into mine. I just breathed in the scent of her hair and gazed down at her delicate features peeking out behind her Si-PAP mask for an hour. It was pure bliss and I walked out of the hospital feeling like I was walking on air.
Sunday, the next day, we got two urgent calls that sent us to the hospital. The afternoon I was planning to shop at Baby-R-Us and register for our baby shower, I was now racing to the hospital instead. I walked into that same room not more than 18 hours later to a different sight. My little girl surrounded by nurses and doctors. Her belly so swollen and dark. Her Si-PAP mask was off so they could put her on a ventilator and for the first time ever, I got to see her face. She had both eyes open, a first for me also. Shiny dark hair, Scott's little heart-shaped mouth and furrows between her eyebrows, my nose. She was beautiful. But my little girl was very sick. Her incubator was wide open with the lid off and they let me hold her hand as they scurried around. All restrictions were lifted and the seriousness hit me as I realized that germs were no longer a concern for my little girl. We faced bigger problems.
They were struggling even with the ventilator to get the oxygen levels in her blood to increase. Her swollen belly was pushing on her lungs. Her right foot was blue as the arteries in her legs were being compressed. She wasn't peeing because of her swollen abdomen which was serious because they would have to stop the antibiotics since she couldn't get rid of it. They were also worried that her potassium levels would spike accordingly and could cause heart arhythmia. In less than a day, a disease called NEC had turned my happiest memory of the night before into a mother's nightmare. Her digestive system which is so delicate and thin at her young age...not meant to be working months before her expected due date...had developed small perforations that let bacteria and air out of her swollen intestines and into her abdomen.
The night was a blur. They brought in a surgeon who would try to alleviate the pressure and examine her system. Scott and I sat in a makeshift waiting room. We dragged chairs into the hallway outside the elevators where our phones could catch in case they called us. We jumped up when the surgeon came outside after just 30 minutes. He asked us to sit down. I came to dread the moments when doctors asked us to sit down or would just pull up a chair themselves. I was in shock as he sat down and quietly told us that 80% of Allie's intestines were infected and died...and that her remaining 20% didn't look good. He was telling us that all we could do was watch that last 20% over the next day and hope that it survived. My body was frozen in my chair. And anger washed over me. All I could think of was that Limp Bizkit song "Break Stuff"...it's just one of those days when you don't want to wake up." I had this overwhelming urge to pick up the chair I was sitting in and just haul it through the glass window. I wanted to scream. I wanted to break things. Instead, I sat there numb as the doctor kept talking and screams echoing in my head.
They got us a room upstairs. I wish we could have just slept next to her crib. I just wanted to sit there and hold her hand. She was breathing a little easier after the surgery relieved some pressure, but the ventilator vibrated her tiny head and her dark eyes kept flying open in confusion. The doctor, who had beent here all day and would be there all night, several weeks away from giving birth herself, urged us to go upstairs and try to sleep. Sleep was elusive. I kept dreaming that she was okay and would wake up crying when I realized that it was only a dream.
The next morning, Scott and I prepared ourselves to go see her. I was hesitant. I knew that our time and hope was running out. I dreaded seeing her and seeing no improvement over the night, because that would kill our only hope. We sat together on the hospital bed and prayed, broken. And then the knock at the door. The doctor came up to sit with us and tell us that Allie wasn't getting better, she was getting worse. They had her on all the support and medications they could give her to keep her alive, and she was slowly declining. She probablyl wouldn't make it the day. The doctor said to come downstairs and we could hold her...and spend as much time as we could with her.
When we lost Rory, I was tormented that I didn't get to spend time with her. I wondered if God had spared me heartache or if it might have been easier if I had been able to hold her. I got my chance with Allison. They laid her on my arms and I whispered in her ear that "mommy and daddy are here. I promise that we'll be here and we're never never ever going to leave you." 19 days old, and it was the first time we ever got to cradle her in our arms. It was so hard leaving your babies in the NICU, and I dreamed about being able to take Allie and Casey home and kiss them all over their faces. I finally got to kiss my daughter's cheeks and forehead, God, she had the softest skin.
And I talked to her. I kept talking and talking. Telling her everything I would ever want to tell her. How proud I was of her. How much I loved her. How much we had prayed for children and how she , my oldest daughter, had amazed us in every way. I told her about her aunties and uncles that she never got to meet. Her cousins that she would never get to play with. I told her how she got her name. I chose the middle name Hope for Allie. I used to put descriptors on people's names in my cell phone caller ID to help me remember who they were. When I met Scott, he became "Scott Hope Cell" in my cell phone list. Every time he called, my heart would just light up when I saw that it was "Scott Hope." It still does to this day. That little word, hope, holds a world of emotions for me. It stands for my church, which gave me the friends I have, the church family I have, it gave me a place to belong, it gave me my husband and thus it gave me my family.
And I sang to her. Her hawaiian name is inspired by the scripture "He rejoices over me with singing." When we read in the baby book that babies can hear voices from the womb, I sang worship songs to them. When I kangarood with the girls, I would sing those worship songs so they would remember me.
Lord i'm amazed by you by Lincoln Brewster
One Thing by Hillsong
Precious Lord by Crystal lewis
We never lifted our eyes from our face. Trying to memorize every little detail. Boasting about her perfect features and cute little face. And it struck us how much she looked like her sister, Rory. It took her 19 days, but she was now the weight and size Rory had been.
As the day wore one, Allison became unresponsive. I could no longer get her to hold my hand. She wasn't opening her eyes. We knew her body was tired. We cried and we told her "Allie, if you're tired, we understand...you don't have to fight any more." I didn't want to let my baby girl go...selfishly, I wanted her to just hang on, come on Allie. You fought through everything else, please don't give up. But my mother's heart broke for her as I watched her tiny little body still, she had already done so much and fought with a strength that amazed me. Scott and I had to prepare ourselves for letting her go. And I'm so thankful that we had a day, a beautiful day to tell our baby girl everything our hearts wanted to say, to hold her hand and kiss her cheek...a beautiful day with our beautiful daughter. And by nightfall, our little Allison joined her identical sister, Rory, in heaven. They must have missed each other, they couldn't stand being apart.
There's this wonderful woman, Lisa. An amazing photographer, she runs a company called Windward Skies. I've followed her work for years as she's been my inspiration. When we found out that Rory had a heart defect and would pass away after birth, I had confided this to Lisa. She offered to come take pictures of us and Rory so we could capture those memories forever. The girls came so unexpectedly and fast, we never got a chance. Monday morning, I sent a message to Lisa. Lisa, who herself is on maternity leave with three young boys to take care, dropped everything...found a babysitter and a camera...and came and sat with us for hours. Thanks to her unbelievable gift and blessed heart, we have the only pictures of us with our daughter. Pictures that we cry over and cherish beyond a price. Lisa, thank you for this.
This is my mother. 3 generations of women, and yes, Allie has our nose.