Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Sunday, October 6, 2013

Jenivee June

This is Jenivee's Story told by Jessica... I wanted all our family to have a chance to read this experience,  also to have it in our book forever.

I'm ready to share Jenivee's story with you all.

Jenivee June was born on April 9, 2013 9:33 am. She spent 4 days in the NICU getting antibiotics because of a low white blood cell count. No reason was ever found, but her WBC count went up and we went home. I had just over 4 months off of work when I combined short term disability with all my sick and vacation hours. Life was bliss. Jenivee first smiled in the hospital and they only got bigger and more frequent!
People offered to babysit, but I had no desire to leave her. I had devoted my life to raising her and I didn't care what parties or events I missed to be with her. Every waking moment I wanted to be with my new obsession. She was the reason I woke up in the wee hours, and actually looked forward to it. Daddy would go to her crib before leaving for work and she'd be awake and content, smiling when she saw his face. It was those few minutes Daddy had alone with her that sealed their love for each other.
She was a perfect baby, having trouble with tummy time, but what child loves it? At about 3 months she started to spitup, a lot. Amounts that looked like full meals. Not after every meal, but started to increase in frequency. I talked with two pediatricians with my concerns. They both insisted it was a part of many children's lives because the esophagus is still maturing. She'll grow out of it, they said. As long as she was gaining weight, nbd.
Over a month she seemed more lethargic to me, she wasn't the chubby cherub grabbing at toys that I'd always imagined. Another pediatrician call was made. I received no response after leaving a detailed message with the nurse. Another week went by until I called and sobbed at the nurse, begging she squeeze us in before our next scheduled appointment. The next day our pediatrician took one look at her and knew something was wrong. (duh) She weighed 9.3 lbs at 4.5 months and appeared dehydrated. He wanted us to take an ambulance, but instead told us to go to Primary Children's ER right away. This was Tuesday the 13th.
The next few days feel like one long dream with times of joy and times of sorrow. She was on IV fluids throughout but had two views of her chest X-rayed on Tuesday and an upper GI on Wednesday. When results came back normal, it was a sigh of relief, but the fact of the unknown was terrifying. Everyday she had visits from physical therapy, neurologists, genetics, as well as her regular vital checks. It seemed like every few hours they would draw blood for testing.
She wouldn't take a bottle and needed to be fed with an NG tube so they could count milk quantity going in. Jenivee continued to spit up her food this way so they placed an NJ feeding tube, which goes straight into her small intestine, after her MRI on Wednesday. Her MRI was to be at 8am. It was then pushed to 2pm, then again to 5pm, which means we wouldn't get results til the next day. The Doctors in charge definitely heard our disapproval with the schedule. That night it was clear that the MRI was irregular so they tested lower on her spine. She came back that night at 8 and finally got a feeding for the day. The DR told me i could pump and then dry nurse for ten minutes so she didn't forget how to eat. That was the best part of our day.
The next morning during her vitals check I noticed her breathing pattern changed. The nurses didn't seem to notice or mind when I pointed it out. When it didn't subside I got very emotional and asked for the Dr to see her. He immediately ordered a blood oxygen level and a lactate level test. Her crib was surrounded with 7 people which left her mother crying by the window.
Her state was critical enough that they took her down to the PICU. On the way downstairs they did a CT scan. I met them down there after calling my husband and family. Everyone rushed to get there. My mom and sister were there when the MRI results came back around noon on Thursday. We were shown the amount of lactic acid build up in her brain stem and spinal cord. We didn't fully understand the devastating news, but the outlook from the Genetic DR was grim. At that moment of tears my husband walked into the room. He saw the sorrow on our faces and wanted to walk out. We didn't want to believe this was happening to us.
The DR explained the lactate levels were affecting her mobility and function, and eventually her ability to breathe. Later it was explained to us like a staircase. She can stay on a level for so long, but eventually she will take a step down, losing more ability. The goal was to keep her on a step for as long as we could before the digression.
She received a priesthood blessing and the words, 'if it be thy will' were used several times. Although i wanted to witness a miracle, I knew in my heart it wouldn't be long. I let her dry nurse as long as she wanted that night.
Friday shit got real. We were still hanging on to hope that her mind could overpower her body, but the lactate levels were so high. Normal is two, she was at 9-11, being checked every four hours. The Drs concluded that she was born with a rare metabolical disorder where the mitochondria in her cells cannot process food into energy correctly. It happens 1 in 50,000. Rather than making energy, her cells were making lactic acid. There is no treatment. Her body would eventually stop telling her heart to pump and her lungs to breathe. Drs asked how much we would want them to intervene when her heartrate dropped. They explained CPR would crush her ribs and would likely not save her. Placing a breathing tube could cause her to go into cardiac arrest and if she did survive, the tube would not come out and would make holding her wishful thinking. There was no other option in our minds but to let nature take its course. We couldn't stand to inflict any pain on our sweet angel.
Saturday we mentally prepared ourselves and family came from hours away to hold her one last time. I talked with my sister Michelle, who was there at her birth as my Doula. I wanted to feel prepared for the inevitable. How? How can you mentally prepare yourself for losing your reason to wake up, to eat, to breathe? I lived for my daughter and I was told she now has hours to live with me. We concluded I wanted her passing experience to be the same as how I wanted my labor/birth experience. Peaceful, comfortable, and in control. I didn't want to hear her heart rate drop, I couldn't imagine the flury of Drs and alarms that would ensue. The sound of the flat line would haunt my dreams.
We had NILMDTS pictures taken. I tried to dry feed her but she was too weak now. We took off her monitors but kept the oxygen tube put in that morning. I knew once everyone had held her, i was not going to let her go. She needed her mommy, and i needed her. Jenivee's favorite song was you are my sunshine. She told me she wanted to hear it one more time and we all sang the entire song to her. Jenivee's favorite place to be was outside and she told Chaison she wanted to go out one more time. The staff quickly made arrangements for us to overlook the city on a private balcony. The sun was setting and I knew it was time. I felt her three final heart beats on my chest and then she was still. At 8:47 pm in a gust of wind my angel's soul was taken above. She was in her favorite place, in her mommy's arms when she passed peacefully in her sleep. The Co2 levels in her blood caused her to feel euphoric and fall into a deep restful sleep. Chais said she was in a meditative state her last hour. The nurses kept expressing to my mom that hers was the most beautiful passing they'd witnessed.
I know things in life happen for a reason. Our baby being taken didn't make a whole lot of sense, but as time goes on I will understand. Jenivee had brought our families together, more than you know. Our friends hug us a little longer and little closer. Strangers are touched by her story and have reached out. She has left this world better than how she found it. We will live our lives better now, in the name of Jenivee and all the purity she stands for. Looking back, we were lucky she kept healthy for this long and gave us this much time to enjoy her. I will always be Jenivee's mommy and I know she is in the care of her grandmother Rose. I look forward to being with her once again.


Sally said...

So, so, so heartbreaking. It's experiences like this that make me hug my little guy a little longer and more often. Thank you for sharing. You have touched my heart.

Angie said...

Oh Brynn... I don't know your Sister in Law, but I am so touched by the story of her sweet angel Jennivee. I feel so sad for her and your brother and their devastating loss. I love that they made the best of a horrible situation. They gave that little girl a peaceful passing! Please pass on my condolences. I know Heavenly Father is watching over these two as they struggle with this tough reality.