Jan 1st and Our Yearly Medical Money is Gone

The next really eventful thing that happened was on Jan 1st 2003. Ellie was 6 months old. We were at Grandma G's for New Years Day. Ellie just slept and slept and slept all day long. She wouldn't wake up to eat, we even gave her a bath and she slept right through it. She also wasn't urinating or pooping at all the whole day.

Finally in the late afternoon I decided to drive her to Primary Children's Hospital because something was definitely not right. My Mom came with me.

Well they ran a bizillion tests and one Dr. mentioned Botulism. We spent hours and hours in the ER. I think this was our first ER visit. They decided to admit her to the hospital.

They kept running tests and on her 3rd night in the hospital she went into full respiratory arrest. They called "Code Blue" over the loudspeaker and you have never seen so many Dr.'s, nurses and equipment get to one place so fast. There were over 60 people there within 30 seconds. It was amazing, but very frightening.

They quickly intibated her (put a breathing tube down her throat and pumped the ambu bag to push breaths of air into her. As soon as they had her stable enough, they took her down to ICU.

They had neurosurgery come talk to us in a little conference room. They said they thought she stopped breathing because she had too much pressure on her brain from the hydrocephalus. He said they neede to drain the fluid in her head. They were going to do it right there in the ICU, not even in an operating room. I asked if I could watch and they said no.

I gave consent and they left. They let me see her and she was still intibated and was now hooked up to a ventilator. I was very scared. I think I gave her a kiss and then left her to have her first operation. The name of the procedure is an EVD (External Venticular Drain). So it is a tube that goes into the fluid in her brain(the ventricles), then drains into a bag (externally).

When they were done we got to go see her. She had the breathing tube and ventilator, a tube coming out of her head and I think she might have even had an IV in her head. (She used to be really hard to find good veins for an IV.) She looked really bad.

One of the residents or fellows or someone had saved the hair that they had to shave off. He told me he picked it up off the floor for me. He put it in a baggie labeled "biohazard". It was her first haircut. It was very touching and thoughtful for him to do that.

They said that the fluid looked clear and that was a good sign. Over the next few days they didn't see a lot of pressure or fluid draining. So they removed the EVD.

The head of the ICU department was Dr. Chris Maloney. He suggested that her body was growing bigger and that her brain just couldn't keep up any more. I could not accept this. He showed me scans of her brain. I had no idea how little brain matter she actually had.

Everyone has ventricles and fluid in their brain. Pretend like the following is a normal brain.

This is what I thought her brain was like. Enlarged ventricles, but she had a bigger head, so I just thought that all of her brain matter was there.

This is what her brain is actually like.

They still didn't seem to have any answers as to why she was not waking up, pooping or urinating. There was always a looming "botulism" diagnosis. THe only way to diagnose botulism is to obtain a poop sample, inject a mouse the poop and see if the mouse dies. Well first they couldn't get any poop for a long time. Once they got some, the mouse didn't die for a long time.

But they never came up with any other explanations, so the best explanation was airborne infant botulism. Only infants under 6 months fo age contract this. Botulism spores live everywhere on the earth in dirt. Infants contract it when they are transitioning from bottle or breastfeeding to eating from a spoon. We had just fed her one time, right before she got sick. There are only 100 cases in the US per year and 25 of those are treated at Primary Children's because of our dry dusty environment. You breathe in the Botulism spores. THey go to your intestines where they grow and mutiply. They then travel through your bloodstream throughout your whole body. They attach to every muscle and paralyze them. They do not let the nerves send electrical signals to each other. It does not leave your body, you just have to wait for your body to grow new electrical senders and receptors. So you become completely paralyzed.

Maybe it was because we were refinishing our hardwood floors. Maybe it was because they were tearing down the old McKay Dee Hospital (that we live right by). Who knows.

She did not contract Airborne Infant Botulism because she has special needs. She was just "lucky".

The results of Airborne Infant Botulism last anywhere from 10 days to 1 year. Ellie's lasted longer than that.

At about 3 weeks they told me that they needed to give her a tracheostomy (or Trach). This is a tube that goes through your throat and into your windpipe. Then you can hook the ventilator up to that. She wouldn't need to be intubated any more. I just kept hoping that she was going to get better. The other reasons they gave me for traching her was that being intubated can cause permanent damage to your vocal cords. And being trached is much more comfortable. People who are intubated have to be on sedatives to make them sleep all of the time, or they just gag. I fought it for a few days, but finally agreed. At the same time the ENT put tubes in her ears.

About 3-4 weeks later she went in for surgery again, this time for a Nissen Fundoplication (Nissen) and a Gastrostomy Tube (G-tube). I fought this one again. I still kept hoping she was just going to wake up and everything was going to be fine. But they just keep sending in Dr. after nurse after specialist after therapist to talk you into it. So finally I consented. A nissen is where they surgically tie part of your stomach around itself so that you can't reflux. Because she was paralyzed food would just come right back up, there were no muscles to hold food down. A G-tube is a tube inserted directly into the stomach and food goes right into the stomach. Up to this point she had a tube down one nostril feeding her and a tube down the other nostril draining.

Right before she left they tried talking me into a PIC line (A more permanent IV Line). I absolutely put my foot down. They had talked me into all of these other surgeries and I felt like everthing was out of my control. I wanted to be in control of one thing. So I absolutely refused.

Looking back, of course she needed all of the surgeries that she got. But at the time I felt like I had no choice in the matter and I hated that.

Ellie was in ICU until March 1 (2 full months) then South Davis Rehab for 3 weeks waiting for home health nurses to become available. (When you are on a ventilator it requires 24 hour care/surveilance).

A perfect baby

Ellie was absolutely a perfect baby. She never cried. She was just content with whatever. She was absolutely beautiful. To look at her at this age you can't tell that there is anything wrong with her at all.

I was able to nurse her, which I felt was quite an accomplishment on both of our parts.

Although she never cried, she also never smiled.

I was very happy at this point. I was content and optimistic about the future.

When she was about 3 months old her pediatrician referred us to Early Intervention. We got Speech, Occupational Threapy and Physical Therapy, also a Vision Therapist from the School for the Deaf and Blind. With each of them visiting our home once a week, we were very busy. I loved all of her therapists.

She never needed the oxygen we were sent home with. We did use the apnea monitor at night, in case she stopped breathing it would wake us up.

"A" loved his little sister from the very beginning.

What-no surgery??

Now remember we were told that she would be rushed to Primary Children's as soon as she was born to do shunt surgery to drain the excess fluid in her brain. We are on pins and needles thinking that her head is going to explode due to the extra pressure. We just kept asking the nurses and doctors when they were going to do surgery. They said that the neurosurgery hadn't come by yet to see her. We were frantic and upset and frustrated. Anyway the next day or so, neurosurgery had come by, but we weren't there at the time so we didn't get to talk to them. The nurse was able to get a neurosurgeon on the phone, so we could talk to them. We wanted to know why they hadn't operated yet. They did some scans after she was born and they showed extra fluid, but not a lot of pressure. So there would be no surgery right now. We were actually upset that they weren't going to operate and "save" our baby like we had been planning on. We had built ourselves up and gotten ready mentally for surgery and then when they didn't do it, it was frustrating.

She was in ICU for 11 days when she was born. On day 3 she had a seizure. They make you stay in the hospital for 7 days seizure-free before discharging you. She also had sleep apnea (stopped breathing). J (Dad) and I (Mom) had to learn CPR. She came home with oxygen, an apnea monitor (to monitor heart rate and breathing), and a pulse ox (to monitor the oxygen in her blood).

During her stay, J would go to work then drive to Salt Lake after work. I would drop A (Ellie's Big Brother-Age 2) off at Grandma's really early in the morning and drive down to Salt Lake. Then drive back late at night. One night before she came home, they made J and I stay in a little room overnight with Ellie to make sure we could handle all of the machines and everything.

I also remember that she had to sit in her carseat for the amount of time it would take us to get home. I think this was to make sure would keep breathing while sitting upright.

We were really excited when she got to come home, but really nervous too. What if she died on us?

On the way home we stopped at Kid to Kid (a local kids consignment store) and bought a bassinet. Remember, we hadn't gotten a nursery ready. A had just slept in our same bed, but with all of Ellie's machines and sleep apnea, we didn't dare put her in the same bed as us.

The Birthday and the Birth

Well, we were scheduled to be induced on my Birthday.

Ellie was 39 weeks along. I was turning 24.

I had my first baby without epidural and was induced. With the first, they started me at about 8 AM and he was born at 5:19 PM. With Ellie, they started me at about 7 AM, when 5 and 5:30 rolled around, and she wasn't here, I couldn't take it anymore. I think I was also just so stressed about her and what was going to happen when she was born, that I just couldn't relax. So about this time I got an epidural. And I'm fine with it. I do prefer natural childbirth, but I don't think that epidurals are evil, or anything like that.

Well, it was great after that. I went to sleep. When I woke up it was time to deliver. I never have to push for very long. So she was born quite soon. She was born at about 7:30 PM.

The cord was wrapped around her neck, but nothing serious.

They had put us in a delivery room with a little pass-through window into NICU. So as soon as she came out, they rushed her over to the window. I literally did not even get a glimpse of her. I sent J to check on her while they cleaned and stitched me up.

I just remember wanting to see her and hold her. I wanted to feel her breathe and know that her heart was beating. I wanted to at least hold her while she was alive.

She had a really low apgar score. But she was breathing. And she was alive!!!!

When I finally got to see her (in NICU) she had all of these cords and monitors attached to her. It wasn't very pretty, but to me she was beautiful.

I always tell people that it's a bad way to spend your birthday, but a great birthday present.

The Rest of the Pregnancy

I remember writing a really nasty email to all of J's family. It said don't talk to me, don't ask me any questions, I love this baby. Now I feel badly about writing it, but I guess my feelings were boiling over.

We went and saw the local perinatologist monthly, for a few months. He told me that I should be induced at the University of Utah Hospital, so that the baby could be immediately taken to Primary Children's Medical Center when she was born. So I switched to a perinatologist at U of U. And we did the hour drive many, many times for the pregnancy checkups. Little did I know how many more medical trips to Salt Lake lay ahead in the years to come.

It was not fun getting ready for the baby. We actually didn't even know if there would be a baby to bring home. We didn't set up a crib, or paint a nursery, or stock up on girl clothes.

We talked about the possibility of giving her a quick baby blessing there in the hospital, to give her a name.

We knew that she would be rushed to surgery, if she was even alive when she was born.

I know this sounds sad and grim and bleak, but that's the way it was. I really don't remember any good memories about this time.

Everywhere I turned, there were happy pregnant people and new/healthy babies. And Fast Sundays with people saying, "I'm just so thankful for a healthy baby". Or people saying, "We don't care if it's a boy or girl, just as long as it's healthy."

I remember bearing my testimony and trying to tell my ward that our unborn baby had problems, but I don't think anyone really got it.

We are members of The Church of Jesus Christ of Latter-Day Saints. We believe in life before this and life after this. So that knowledge was a great comfort. We also believe that if your family is sealed in a Temple, that bond will not be broken after death. So we knew that if she died, we would see her again. We also believe that children who die before the age of 8 (the age of accountability-this is the age when children can be baptized because they are old enough to know right and wrong and understand consequences) and those who have special needs are automatically "saved" in the kingdom to come. Our faith carried us through this difficult period.

Long time no write

Well, it's been over a year since I posted on Ellie's site. So I'll write a little more today, then we'll see what happens.

After the initial diagnosis/shock/denial, J (hubby) and I went through a lot of emotions.

A few memorable days that I remember were: (This is all before she was born)

#1) My Mom told me that if she died, maybe her organs could help save other babies. That made me feel better.

#2) I had a day that I decided to have a funeral. It was a funeral in my brain. It was for the perfect baby, the dreams and hopes that I had for her. I let that baby die and it allowed me to give new life (in my heart) to this new life inside of me. It was really a very healing day for me.