Monday, September 04, 2006

Dear Karin,
I have been receiving your emails and updates for a while, but have never been able to respond or help in any way. I had a heart baby, a beautiful girl from Guatemala. I am only now, a year and a half since her passing, able to find the courage to tell her story. Please bear with me as I'm not sure what format or how much information you were wanting on each heart story. I'll tell you as much as I can and we'll see how far I get.
Jennifer Felipe Perez was born in Chiquimula Guatemala on 02-02-02 (thus started her fight for O2). She was 6 months old living in a shelter with her biological mother and two brothers, before anyone realized she had a heart problem. Her lips were blue, her finger tips blue, her oxygen saturation in the 50s and 60s.
The organization I was with helped to transfer her under my guardianship so I could protect her and keep her "germ-free" until we were able to find out what the problem was and get a "medical" visa to the states.
She and I lived together in Guatemala for 9 months. At the time I was 21 and had been in Guate. For 2 weeks, didn't speak the language, didn't have any friends, or a place to live. I wonder now, if I had been more competent maybe she would have had the surgery sooner and still be alive today.
For those 9 months she and I went everywhere together. We slept in a hotel until I found housing through a school. We went to school together as I tried to learn Spanish, we slept together and she sat on my lap at every meal. Through a whole bunch of trial and error and retries, we finally found a doctor in Guatemala City who would do an catheterization and in November of 2002, we found out just how bad it was.
Jenni had pulmonary atresia, ASD and VSD, and transposition of the ventricles. At nine months, she was living on half of the oxygen she should have had and was thriving, slowly but thriving none the less.
It took 4 more months to find a hospital who would no only take her with this dim out look but be willing to do it for free. Dr. Bove of the University of Michigan was the only one who would take this chance. Finally on April 29th of 2003, I headed back to the States, with a very precious little girl on my lap.
After all the preliminary tests, the surgery date was set for May 9th. On May 7th she had an "episode?" I guess you could call it. She vomited, stopped breathing, went unconscious, her jaw locked up. It was the count down to her surgery. On May 9th, Friday morning, after being in ICU all day on Thursday and having another episode, she was brought into OR early and they started on her surgery, thought to be about 4-6 hours. Thirteen hours later, they were done. Updates had reached us through out the day, of the heart and lung and then back on, a catheterization, more meds., back to the OR. When we finally got to see her, it was amazing. Her fingers were no longer blue nor were her lips, they were pink. My baby girl had pink lips.
She almost died that night, her blood pressure dropping drastically,they put her back on ECMO. I spent Mother's day by my baby's bed in ICU, looking at the multiple tubs of blood flowing in and out of her body, the numbers floating up and down. I watched those numbers and my heart sank and raised with every turn of digits.
Monday they took her off of the machine after have successful test the day before. Again we almost lost her, her blood pressure dropped down to 40/19. One last shot of a steroid and one more on-going prayer brought her numbers slowly creeping up.
She stayed off ECMO and a week later was given an internal pacemaker after the battery stopped on her external one and she coded for a couple seconds. It has to be one of the strangest feelings to feel the pulse leave your daughter's tiny wrist. The doctors took this as a sign that she needed something permanent and I felt a little better not seeing mini jumper cables leading from Jenni's chest to a Duracell battery.
We spent three months in Michigan. A series of on-again/off-again intubations, stays in the PICU and moderate care, and peaks and valleys of hopes and strength. Our stay finally ended with a month in general care and two weeks at the Ronald McDonald House.
I took Jenni back to Montana with me, my home state. We stayed with my parents and lived in our beautiful Rocky Mountain valley where our community had pulled together to help support us.
Jenni's health stayed weak but happy. Her oral aversion was so huge that all of her nutrition came through a NG tube. Three months later, in early December, there was little sign of improvement and a local pediatric doctor placed a gastric tube. During her healing time post op. Something happened to her pacemaker connection. After a dreadful night of Jenni appearing to be shocked by her own pacemaker so that her eyes bulged and she started to lose consciousness, she was life flighted to Spokane's Children's hospital. Though they couldn't find anything wrong, the pacer was re-calibrated and seemed to work okay. We spent a week in Spokane, only to return again two months later.
January brought us RSV and another week in our local hospital. By February, her body had started to reject the pacemaker and was pushing it to the surface. She was too weak to really celebrate her 2nd birthday. A trip back to Spokane scheduled appointments for the next month.
In March of 2004, we were back in Spokane for the removal and relocation of her pacer. We ended up staying for a month. Jenni got the Roto Virus and her weight dropped down under 15 pounds.
The summer and fall were a blur of appointments, therapies, eating experiments, and hospitalizations. Jenni learned how to crawl and her personality flourished with the new words and sign language she was learning. I was married in June, and we moved in with my husband and his daughter. We had bought property and were building a house with lots of windows so that even when Jenni was sick, she could look out the windows and see the birds fly past. By the end of September, we were pregnant and I was glad that our new place was going to have an extra room.
In October, Jenni was slowing down. Psychologically, her attachments and fears didn't make sense.
In November, Jenni's urine turn black/red. UTI test results were inconclusive. Her pediatrician grimly sent us to another doctor who sent us to Spokane that night. It was a Wednesday. By Friday, the doctor suggested that we start to think of how to care for her during what may be her remaining days, weeks, months. The Monday after, he gave no other hope. Tuesday morning, November 9th, 2004, 4:00 am, she passed away.
One week. Everything turned in one week. I held her in my arms as her pulse stopped again, this time permanently.
I'm sorry, this was probably a lot more than you were wanting. I have a really hard time keeping Jenni's story down to a couple sentences, or paragraphs for that matter. She was the most amazing little girl. I love her more than I can ever explain.
Thank you for letting me send this to you, whether you use it or not. It helps to have others know how wonderful she was, what a fighter she was. God bless you for your strength, for all the work you do. Perhaps someday I'll be strong enough to help.

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