Wednesday, November 19, 2014
The Refiner's Fire
I really love this video. It humbles me because I am amazed at this woman's strength. I needed to hear this today and I'm so grateful for the gospel that gives me hope that I will be with Quinn again one day.
Thursday, October 23, 2014
Quinn's last week
We had one perfect month before she passed away. I think God
gave us that perfect month with Quinn. For one month she had no seizures she
took her feedings well, and she did excellent in her occupational therapy. She was taking some pureed foods by mouth; a
huge accomplishment for her. I really thought she’d make it through the first
year. I knew that the majority of children with AGS don’t make it through the
first year…but she was doing so well, I had no doubt. She was only 3 days short
of turning 11 months old. She passed away on OCT 25, 2013, at 12:37 p.m. It was
a Friday; I think it’s the worst day I’ve ever experienced in my life. I hope
there’s never a day that tops it.
Quinn died on a Friday. I remember that the weekend before
she’d been sick. She’d vomited a few times. This was frustrating, but not
unusual. She vomited a lot. She was fed through a feeding tube that connected
to a port in her belly that fed right into her stomach. She wasn’t able to tell
us when she was full and her feeding pump just kept pumping at set volume
formula right into her little belly. When it got too full she’d vomit, nature’s
pressure relief valve.
I woke up OCT 21st, Monday morning, exhausted.
Quinn had been fussy through the night. She hadn’t slept well, and so Barlow
and I had tag-teamed through the night to hold her close and comfort her. We’d
take turns closing our tired eyes for a short amount of time until the other
would be deliriously tired and at his/her wits end. Barlow left for work by
6:45 a.m. I got Quinn dressed, planning on taking her to her Grandma’s.
Barlow’s mother and father were watching Quinn during the day while I was at
work. Shortly after I got her dressed she threw up. I cleaned her up and got
her dressed again. I was trying to fix my hair when I heard her gagging again.
I ran over the pick her up before she chocked. She vomited on her new outfit
and on my work clothes. I cleaned her up again and laid her on the middle of
our bed while I change my cloths. She then vomited on her clothes and on our
bed. That was it! I broke down in
tears. I called my work and explained I
couldn’t come in because Quinn was so sick. I was really trying not to miss
more days. I’d missed a lot work for appointments, occupational therapy, and
hospital admissions. The Doctors and
staff that I worked with were amazingly patient with me. I’m so grateful that
they were so flexible. They had worked with special needs children and knew how
hard families had to work to care for them. The rest of the day we rocked in
the chair in her room and I gave her tiny amounts of formula through her
feeding tube. She kept it down and started to perk up.
Tuesday morning she looked much better. She was making wet
diapers and she kept most of her feedings down through the night. She did great
in her occupational therapy with Heidi in the morning. She only vomited once a
tiny bit. I took her to her grandma Hardy’s around noon. A Short time later
Grandma Hardy texted Barlow concerned that she’d been vomiting. I’d asked one
of the Doctors I work with look at her, since there were no openings at her
Doctor’s office. We all thought she had gastroenteritis (stomach flu). Barlow
took her home, and when I arrived he was pretty frustrated. She could only keep
down 1 mL of liquid at a time. We had a hard time feeding her even through the
tube after we got ~ 10 mL in she'd vomit. Tuesday night we set her up on her
pump at 15 mL/hour. We had her in her bassinet in our bedroom at 11pm we heard
her vomit and we found she was vomiting blood. I looked like coffee grounds, which wasn’t a
great sign.
I was pretty scared. We had been through some pretty scary
experiences with Quinn by now, seizures, not eating, fevers and 3 hospital
admissions to Seattle Children’s. Barlow
asked me, “On a scale of 1-10 how concerned are you?” I rated this as an 8.
We took her to the ED. They gave her an IV because of course
she was dehydrated. They did some blood tests and the only thing abnormal was
her potassium which is not unexpected. She perked right up after she got some fluids
through her IV. The ED Dr. thought she had a gastritis that sometimes causes
bleeding in the stomach. I hooked her up to her feeding in the ED and she took
~ 80 mL no problem so they sent us home with some Ondansetron (an anti-nausea
medication). They usually use it for patients who are vomiting when getting chemotherapy.
We saw her regular Dr the next day (WED) they thought she
had Mallory Weiss tears which is when you vomit so much that you break some
blood vessels in the esophagus. That is how they explained the blood.
Thursday she started breathing fast. I rationalized that it
was because she'd been vomiting a lot. She did this a lot when she wasn't feeling
well. Grandma Hardy called again when watching her and was concerned. We
brought her in to check her oxygen at the clinic I work at and she was saturating
fine.
Friday was our anniversary. My in-laws were going to be out
of town so we planned to celebrate our anniversary on Thursday night. After
stopping by the Dr’s office she seemed to settle down. We took her to Grandma
and Grandpa Hardy’s and we went out for a quick anniversary dinner.
Grandma Hardy texted
me that she was worried about Quinn. Barlow was not too happy when I told him
we had to end our date and go get her. When I saw her I felt sick. She looked
gray she was breathing hard. We took her to my clinic I couldn't get an oxygen
reading on her we went to the ED. I thought she'd aspirated (inhaled some vomit
into her lungs). When I was checking in with
the ED receptionist one of the nurses walked by and saw how gray she was. She
picked Quinn right up and took us back to a room. . They had no rooms open so they kicked a poor
woman with a sprained ankle out of a room so we could be seen. They hooked her
up to oxygen and she pinked right up. We had some men from our church come give
her a blessing. They did a chest X-ray and found her heart was enlarged and it
looked like she had pulmonary edema. About
4 weeks earlier she’d been treated for a small pneumonia and her x-ray hadn’t
had any signs of a heart problem.
It was a real struggle to get an IV in her because she's so
chubby and she was dehydrated. The nurses tried to place the IV using
ultrasound and we finally got a good line. They planned to transfer us to
Seattle Children’s. Barlow went home to get clothes for us. The staff had
planned on sending us to the hospital us by ambulance to Seattle. (It was too
foggy for us to go by helicopter). We had to wait for Barlow to come back,
because he had the car seat in the car. I didn’t know that they used the car
seat to transport a baby in the ambulance.
She didn’t like being strapped in and she let out a little whimper…
that’s the last time I heard her cry…
I rode in the
ambulance with Quinn and Barlow drove our car. The ride out went smoothly. I
was still in denial about how sick she was I thought she was going to be fine.
We'd been through things like this before and she'd been fine. I had to ride in the front so I couldn’t see
Quinn. She was quiet and seemed relaxed through the drive. I chatted with the
Ambulance driver and I tried to distract myself for worrying.
When we got to Seattle they got another IV in her and
started doing some tests. They did a blood gas on her and I knew the numbers
they read of were bad. They hooked her up to an epinephrine drip to help her
heart contract more effectively. They did another X-ray I could see it this
time. After I saw her X-ray…I knew we were in big trouble. Her heart took up
nearly ¾ of her chest. There was no room for her lungs to expand. They put a tube in the breath for her, put in more IVs and did more tests.
The Dr. Sat down with us and explained that her heart was
only working at 25%. They explained that they were doing all they could but the
next step was ECMO (where they bypass the heart and lungs, they take the blood
out oxygenate it and pump it back in to the body). I knew that once we got on
ECMO the next step was a heart transplant (Quinn was not a candidate due her
AGS) or they would have to fix the underlying problem with her heart. When they
told us that I knew... I knew that she was going to die.
I tried to explain it to Barlow and he was understandably
upset. I was still really numb. I started calling my mom (my father passed away
2 years ago) and my sister they were going to get the first flight out of SLC
that they could. Barlow called his parents to come out to Seattle Children’s as
soon as they could.
After talking to some specialists and Quinn’s primary doctor
on the phone, we decided not to do ECMO. They thought that was her neurological
condition (Aicardi-Goutieres) was the cause of the cardiomyopathy. The odds of
them finding a way to fix the underlying problem were very slim. On ECMO she
may have been in more pain, and it would prolong the inevitable. It was a hard
decision; because I didn’t want to give up hope. We weren’t ready to let go; I don’t
know that we ever would be.
We had some people from church give her a blessing and a
name. Barlow's parents made it in time to hold her. We held her and we had them
extubate her (take out the breathing tube), give her pain medicine and stop the
epinephrine. She didn't cry and she didn't struggle. She just didn't ever wake
up...
They let us hold her for a long time before one of the
doctors finally came in and called her time of death. She’d been gone for
several minutes before he’d come in… I think they were letting us hold her one
last time before hearing those words. The nurses took out all the IV’s. The
volunteer at Seattle Children’s made imprints of her hands and feet for us.
Another wonderful Volunteer from Solumination took pictures for us. At some
point they asked about doing an autopsy, and we gave permission to use any of
her organs that they could. Barlow’s parents went to the airport to pick up
Barlow’s brother who’d boarded a plane in SLC as quickly as he could. Barlow
was exhausted and fell asleep on a couch in her room I called my mother and my
sister.
I was alone with Quinn for quite some time. The nurse came
in and asked if I’d like to wash her. I removed all of the bandages from her little
body. I washed away all the iodine. She had so many little puncture wounds in
her little arms from all the IVs. I was still in such shock it began to wear off
and I had a little break down I cried and cried. I woke Barlow up sobbing and
begged to leave. He checked with his parents they were on their way to the
hospital with Abram and wanted to see her one last time. I asked Barlow to stay
with her while I walked around. I didn’t
want her to be alone, but I couldn’t stay in that ICU room for one more moment.
I somehow made it outside and walked and walked. Seattle Children’s has some
nice grounds and was grateful for a place to walk. Eventually Barlow’s family
came back and saw her one last time. Grandpa and Grandma Hardy started the long
drive home. Abram stayed home to drive our car. Barlow and I had been up for
well over 24 hours and were no condition to drive. We said our sad goodbyes and
left Seattle Children’s. We had spent so much time at Seattle Children’s over
the last year it had begun to feel like our second home. I think that made it a
little easier to leave her, because we knew she’d be treated well and with
respect. We picked up my mom and sister from the airport and Abram drove us
home. It was and is the most painful thing I’ve ever been through.
Thursday, June 26, 2014
Elder Holland... My Rock
I've been listening to a lot of talks by Elder Holland. His words of wisdom have been my rock lately....
“God expects you to have enough faith and determination and enough trust
in Him to keep moving, keep living, keep rejoicing. In fact, He expects
you not simply to face the future (that sounds pretty grim and stoic);
He expects you to embrace and shape the future--to love it and rejoice
in it and delight in your opportunities.
“If for a while the harder you try, the harder it gets, take heart. So
it has been with the best people who ever lived. (The Inconvenient
Messiah, BYU Speeches, Feb 15, 1982)”
“You are doing God's work. You are doing it wonderfully well. He is
blessing you, and He will bless you, --even--no, -especially--when your
days and your nights may be most challenging. Like the woman who
anonymously, meekly, perhaps even with hesitation and some
embarrassment, fought her way through the crowd just to touch the hem of
the Master's garment, so Christ will say to the women who worry and
wonder and weep over their responsibility as mothers, `Daughter, be of
good comfort; thy faith hath made thee whole.' And it will make your
children whole as well.”
“Don't you quit. You keep walking, you keep trying, there is help and happiness ahead. Some blessings come soon. Some come late. Some don't come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be alright in the end. Trust God and believe in Good Things to Come.”
“God expects you to have enough faith and determination and enough trust
in Him to keep moving, keep living, keep rejoicing. In fact, He expects
you not simply to face the future (that sounds pretty grim and stoic);
He expects you to embrace and shape the future--to love it and rejoice
in it and delight in your opportunities.
God is anxiously waiting
for the chance to answer your prayers and fulfill your dreams, just as
He always has. But He can't if you don't pray, and He can't if you don't
dream. In short, He can't if you don't believe.”
―
Jeffrey R. Holland
“If for a while the harder you try, the harder it gets, take heart. So
it has been with the best people who ever lived. (The Inconvenient
Messiah, BYU Speeches, Feb 15, 1982)”
―
Jeffrey R. Holland
“You are doing God's work. You are doing it wonderfully well. He is
blessing you, and He will bless you, --even--no, -especially--when your
days and your nights may be most challenging. Like the woman who
anonymously, meekly, perhaps even with hesitation and some
embarrassment, fought her way through the crowd just to touch the hem of
the Master's garment, so Christ will say to the women who worry and
wonder and weep over their responsibility as mothers, `Daughter, be of
good comfort; thy faith hath made thee whole.' And it will make your
children whole as well.”
―
Jeffrey R. Holland
Friday, February 7, 2014
Friday Fives first week in Feb
I have not been doing a great job of updating my blog. Since Quinn's birth and death I've been really withdrawn. I know I need to get out and write more. Even if very few people read it I'm hoping I'll feel better.
I follow a lot of blogs using Netvibes and it keeps me updated. I've noted a lot of bloggers do Friday favorites or friday wrap ups.
I'm borrowing the idea of Friday Fives from the small things bloggs.
1) Well we'll start from last weekend. Last Saturday I went to a pediatric conference at Seattle Children's. I went with my cowork and friend Darci. We had a nice drive and the time flew by since we were chatting so much. We learned about lots of helpful tips in treating patients. I love going to these confernences. I hate sitting for such a long period of time, but it's worth it.
2) On Sunday it was my turn to teach the relief society lesson. I was so nervous and it was sort of a challenge. Afterwards I felt like crawling under the carpet. I felt I was not prepared and that it was patetic. It wasn't the lesson it was my peperation.
3) One of my dear sweek coworkers lost her mother. It's been a long hard road for thier family and my heart goes out to her.
4) Crossfit: Barlow and I have been doing crossfit. We are in the beginner class so we are building strength and technique. It's 3 days a week and we crawl home in the evenings after these classes. The real soreness seesm to set in ~ 2 days later. We aren't pushing around tractor tires yet, but we are improving.
5) Yesterday I gave blood in Levenworth. It only took ~ 1 hour and I was done no problem. Barlow and I are trying to donate regularly. The only issue is that we get lots of calls thanking us and asking us to reschedule. The marketing is sort of smothering.
http://www.redcross.org/blood
I follow a lot of blogs using Netvibes and it keeps me updated. I've noted a lot of bloggers do Friday favorites or friday wrap ups.
I'm borrowing the idea of Friday Fives from the small things bloggs.
1) Well we'll start from last weekend. Last Saturday I went to a pediatric conference at Seattle Children's. I went with my cowork and friend Darci. We had a nice drive and the time flew by since we were chatting so much. We learned about lots of helpful tips in treating patients. I love going to these confernences. I hate sitting for such a long period of time, but it's worth it.
2) On Sunday it was my turn to teach the relief society lesson. I was so nervous and it was sort of a challenge. Afterwards I felt like crawling under the carpet. I felt I was not prepared and that it was patetic. It wasn't the lesson it was my peperation.
3) One of my dear sweek coworkers lost her mother. It's been a long hard road for thier family and my heart goes out to her.
4) Crossfit: Barlow and I have been doing crossfit. We are in the beginner class so we are building strength and technique. It's 3 days a week and we crawl home in the evenings after these classes. The real soreness seesm to set in ~ 2 days later. We aren't pushing around tractor tires yet, but we are improving.
5) Yesterday I gave blood in Levenworth. It only took ~ 1 hour and I was done no problem. Barlow and I are trying to donate regularly. The only issue is that we get lots of calls thanking us and asking us to reschedule. The marketing is sort of smothering.
http://www.redcross.org/blood
Tuesday, September 10, 2013
Wednesday, April 10, 2013
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