Michael doesn't understand this, and says it's not people's business, but I want to
share with you what happened ~ why one Thursday in February Emma was
"perfectly fine" and five weeks later, another "great day" Thursday in
March was her last.
I wrote
a blog post about "the beginning of the end", back when we just thought
it was a weird thing that happened, not knowing it was the start of
something completely terrible.. You can read that HERE. <<<
*** Please note the following paragraphs include motherly rage :)
Sadly,
this was due to inflammation in her airway. She had granulation tissue,
which is common in trach kids since that forms when a foreign object
(like a trach!) is inside the airway and the granulation tissue is
trying to "protect" the airway. The inflammation was due to her having
tracheitis (a common infection in trach kids where they get mucus around
the stoma and need to be suctioned more). This is where I blame
Pulmonology.. they would not prescribe medicine that had helped Emma in
the past, and the medicine they did give us, only helped about 60% for
the ten days she was on it. And the doctors wouldn't give us the
medicine we wanted until she came in for an appointment, which we
couldn't get scheduled until March 21st because they only have the "vent
clinic" (for ventilator kids) ONE DAY per month!!!
>>
Vent kids.. who are on ventilators.. because they have a harder time
breathing and using their lungs than regular kids.. can only get seen one day a month
by the doctor, so it takes forever to get an appointment. Spoiler
Alert** Emma's appointment on March 21st ended up being SIX DAYS AFTER
she died!!!!!! Oh, and also Emma has only had one working lung since at least October 2021, which they knew.
Anywaaaaay... :)
So when we went home on Feb 13th, we were told that these "blood episodes" were something new we would just have to "deal with", and she did have them every couple of days. Some were as bad as when we called 911, some were not as bad. We were actually glad that Michael's mom was at our house to see one of them because she had previously asked him why he was "being so dramatic" when he called her on the phone, crying one day from the hospital. That night his mom cried in Emma's bedroom as she watched us suction blood from her airway, taking Emma's stained pajamas off, us comforting her, and cleaning everything up afterward.
So when we went home on Feb 13th, we were told that these "blood episodes" were something new we would just have to "deal with", and she did have them every couple of days. Some were as bad as when we called 911, some were not as bad. We were actually glad that Michael's mom was at our house to see one of them because she had previously asked him why he was "being so dramatic" when he called her on the phone, crying one day from the hospital. That night his mom cried in Emma's bedroom as she watched us suction blood from her airway, taking Emma's stained pajamas off, us comforting her, and cleaning everything up afterward.
 |
| A quick visit from Aunt Sue Ann (and Uncle Tim from Indiana) and lots of fun balloons from her teacher, Ms. Carolina! She also brought a new toy that became a favorite- DJ keyboard!! :) |
I
said thank you prayers for every day -and hour- that passed without an
issue. And we played together, being silly like normal, when everything
was good. Emma bounced back pretty quickly, after she took a nap from
exhaustion. Then she'd wake up as if nothing happened, and even
continued with her school hours at home. Her teacher, Carolina, is the
best and we are keeping close in touch with her. She has been coming to
our house for dinner, as our neighbors have been scheduling a Meal Train
for us.
On February
28th, we had to call 911 a second time and have Emma taken to the
hospital again because she was having such a hard time breathing. Even
on high amounts of oxygen, but luckily that day was not a bleeding day. She
was struggling for each breath, or like Michael said- it seemed like
she was
"air trapping"- getting a deep breath in, but not being able to breathe
all the way out. That time she was in the hospital for five days, and
we did not leave with the outcome we were expecting. Suddenly our lives
crumbled. We cried more than we had cried in a very long time.
The
doctor told us that there was nothing more they could do for Emma. The
air trapping was being caused by "floppy" pieces of granulation tissue
blocking her airway each time she would exhale. Trying to laser the
granulation tissue off was too risky because they didn't know how thick
it was and if they burned off too much, it could burn a hole in her
airway. The only other option was surgery, but we all knew that wouldn't
work because her airway is "tissue paper thin" so sewing any part of
her trachea would be impossible, and she would die on the operating
table. We didn't want that.
 |
| ^^ HAPPY BAPTISM, EMMALOU!! |
We
had Emma baptized in the hospital on March 2nd. We left the hospital
the next day, and on March 4th Emma was enrolled into Hospice care. A
very nice male nurse and female social worker spoke to us in the kindest
tones, but that didn't make it hurt less when they asked us things
about picking out a funeral home and signing a DNR. Once I broke down,
they did ask if I wanted them to stop talking about it, but I told them
to continue because I knew it was stuff we needed to keep in mind to
discuss for the far too near future.
We
remained her sole caretakers, as we always have been, with an assigned
Hospice nurse who communicated with a doctor so we were still able to
get the medicines that Emma needed, which are usually only allowed in
medical centers. It was mostly meds to help quickly settle her every 6-8
hours when she had a "panic attack" from not being able to breathe
properly. As the days went on, she didn't need as much medicine, and she
seemed to be getting better. Not needing to sleep as much, wanting to
be awake and playing with her usual music/learning toys/books. Emma had
several really good days that it got to the point where we were
(cautiously) taking her on wagon rides around the neighborhood again. We
had visitors- our parents, and my best friend from Colorado flew in for
several days, but we made sure that Emma got rest when she needed it.
She loved being held and always pointed to the chair, so we knew she
wanted to be held for a long time. She would fall asleep in our arms for
30 minutes or longer, wrapped in a blanket. Snug as a bug in a rug.
Michael
and I tried not to get our hopes up. I was definitely getting really
positive about everything, but he stayed in the "she could die any day
now, just like the doctor said, nobody knows". I would always reply
with, "I know. But don't be sad right now. Save your tears for when you
really need them again and enjoy every happy second while we still have
her. She's been laughing a lot today!" I took as many pictures of her
smiling and laughing as I could. Those are my favorite, especially if I
am in them with her. He thanked me for taking as many pictures and
videos as I did, since she was born. If I only took as many as he did,
we would have maybe 1/10 of the photographic memories. I am very glad as
well. I especially love the videos. Even the boring ones of her just
sitting there for a full minute, rubbing her face, as I wait to get one
of her cute sneezes that make a little squeak sound.
 |
| All of the sweet notes and drawings everyone has sent to Emma. ^^ |
We
all went to bed on Thursday, March 14th, content and tired, ready for
another day of fun with our girl tomorrow. I told my mom that we needed
to take Easter pictures of Emma the next day. I don't know why I didn't
take any of her last year. I always make scrapbook cards with the mini
Polaroids. Around 1am I watched Emma on the baby monitor. It was my
favorite thing to watch. "The Emma Show". The camera was attached to the
corner of her bed, so I watched as she sat up, kicked her leg several
times, which means she is cranky. I almost went in to check on her, and
give her a kiss.. But before bed we had talked to her about
self-soothing and trying to sleep through the night more so we could all
get more sleep at night and have more time to play together during the
day. After a couple minutes of her just sitting there. She scooted
herself into the corner and laid down again- her favorite sleeping
position. I smiled, so proud of her for being a big girl and thinking
about what we said.
At
3:30am I saw that Emma sat up again, and I quickly got out of bed just
because I wanted to give her a kiss. I wanted to hold her and tell her
that I love her and what a great job she had done earlier. She had her
galaxy projector going, but to get some more light, I cracked the closet
door. I saw that she had a dark glob of something on her bib. It
quickly realized that it was a very large blood clot that she had thrown up. I
looked down and her pajamas were completely covered in blood. I don't
even remember looking at Emma's face to see her reaction to everything
that happened next.
"MICHAEL!
MICHAEL! MICHAEL! MICHAEL!" I yelled for him over the baby monitor. He
later told me that for some reason he had already started walking
towards her room when he heard me yelling, which was good. He turned on
the bedroom light and I heard him say, "Oh my God, her circuit
(tubing)." I hadn't even noticed that, but it was also filled with blood and very thick clots. We had taken
care of these "blood episodes" several times before, but seeing this
much put us in a panic and our brains took much longer to function. Michael has apologized so many times over the
past few weeks, "I'm sorry I couldn't save her." But there was no
stopping it. She passed out quickly. We still did everything we could,
everything we knew how to, telling her how much we loved her, whether
she could hear us (from Earth) or not..
..That's
all I'll say now. "Long story long" as I call it. I keep having to stop
while writing this because I start crying again during each paragraph.
***
Here
is the eulogy that I wrote for Emma's memorial. I barely got through
it, tears covered my eyes the whole time I was reading it. The minister
even told me afterward that it was one of the best he had ever heard in
the many years of funeral services he had been to/spoke at, so get those
tissues handy... if you weren't already using them. (Bonus points to
anyone who knows what the last lines are from!)
>>
"On May 18th, 2017, when I was 33 weeks pregnant, I was repeatedly told by my doctor that Emma would not be compatible with life. I immediately pictured all the pink baby clothes hanging in her closet that she would never get to wear. Her room was already set up and decorated for her tiny arrival. Luckily, he was wrong and we now live in a time with trachs and ventilators and feeding tubes, but the first year was a big struggle while we waited for her to grow stronger in the NICU.
Every day was an answered prayer as we had no idea how long she would be able to survive, even with the medical assistance. God opened a huge door when we were given the opportunity to fly her to Michigan when she was 6 months old. We honestly believe that surgery saved her life and gave us a lot more time with her.
One positive that came out of Emma being in the hospital so long, was that it taught her to be independent. And our parenting style allowed her to explore more and figure things out on her own. We loved her curiosity as she would scoot across the carpet or pull her legs behind her, moving from room to room, during times she could breathe without the ventilator. She loved rummaging through bins and drawers and trashcans. Anything she could get her hands on, especially if it made a crinkle sound. As long as it wasn't something dangerous, I didn't mind, and the mess was always quick to clean up. I always said, "a messy room meant she had a fun day!"
Emma was such a silly girl. "The silliest silly", as I would tell her. She loved to laugh and make us laugh, and it was interesting to see that she had such a big personality without saying a word. She could communicate so well with gestures and facial expressions.
I always told her that I was the luckiest Mommy, and I was especially fortunate and grateful to be able to stay at home with her full time for the past two and a half years when we moved down here. People asked if I ever got bored staying at home and I would laugh. I had the best job! I got to spend every day with my best friend.
Emma was so go with the flow whenever we took her somewhere. She was my mailbox buddy, with her own set of keys, opening packages I would order and receive. She always decided which set of stickers were her favorite and would proceed to play with them for the rest of the day. One day I even found a pack of journaling cards in her toy bin! I am glad that I did so many holiday photo shoots with her over the years. She was always a willing model, as the many beautiful scrapbooks can attest to.
Emma was so curious about life, whether it was watching animals at the zoo, feeling the wind blow at the beach, playing with sand for the first time, or being mesmerized by the bright florescent lights at Target. She was brave and we would often find her playing in the dark, crawling under furniture, asking to be lifted so high that she could touch the air vent on the ceiling and then be quickly dropped into our arms. And she was so much smarter than most people realized.
However, this time, for reasons we will never understand.. for reasons God only knows.. we do have all of her small clothes hanging in her closet that she will never wear again. And her room is still set up and decorated, as if we can walk in at any moment and see her playing.. But maybe that is why she only needed to be here for 6 years, 9 months, 2 days, and 15 hours. Because she lived more life in that short amount of time, than most of us do in 30 or 40 years. And now, as hard as it may be, we try our best to continue on and help others the way she helped us all so much.
Because we knew Emma, we have been changed for the better.. We have been changed for good."
"On May 18th, 2017, when I was 33 weeks pregnant, I was repeatedly told by my doctor that Emma would not be compatible with life. I immediately pictured all the pink baby clothes hanging in her closet that she would never get to wear. Her room was already set up and decorated for her tiny arrival. Luckily, he was wrong and we now live in a time with trachs and ventilators and feeding tubes, but the first year was a big struggle while we waited for her to grow stronger in the NICU.
Every day was an answered prayer as we had no idea how long she would be able to survive, even with the medical assistance. God opened a huge door when we were given the opportunity to fly her to Michigan when she was 6 months old. We honestly believe that surgery saved her life and gave us a lot more time with her.
One positive that came out of Emma being in the hospital so long, was that it taught her to be independent. And our parenting style allowed her to explore more and figure things out on her own. We loved her curiosity as she would scoot across the carpet or pull her legs behind her, moving from room to room, during times she could breathe without the ventilator. She loved rummaging through bins and drawers and trashcans. Anything she could get her hands on, especially if it made a crinkle sound. As long as it wasn't something dangerous, I didn't mind, and the mess was always quick to clean up. I always said, "a messy room meant she had a fun day!"
Emma was such a silly girl. "The silliest silly", as I would tell her. She loved to laugh and make us laugh, and it was interesting to see that she had such a big personality without saying a word. She could communicate so well with gestures and facial expressions.
I always told her that I was the luckiest Mommy, and I was especially fortunate and grateful to be able to stay at home with her full time for the past two and a half years when we moved down here. People asked if I ever got bored staying at home and I would laugh. I had the best job! I got to spend every day with my best friend.
Emma was so go with the flow whenever we took her somewhere. She was my mailbox buddy, with her own set of keys, opening packages I would order and receive. She always decided which set of stickers were her favorite and would proceed to play with them for the rest of the day. One day I even found a pack of journaling cards in her toy bin! I am glad that I did so many holiday photo shoots with her over the years. She was always a willing model, as the many beautiful scrapbooks can attest to.
Emma was so curious about life, whether it was watching animals at the zoo, feeling the wind blow at the beach, playing with sand for the first time, or being mesmerized by the bright florescent lights at Target. She was brave and we would often find her playing in the dark, crawling under furniture, asking to be lifted so high that she could touch the air vent on the ceiling and then be quickly dropped into our arms. And she was so much smarter than most people realized.
However, this time, for reasons we will never understand.. for reasons God only knows.. we do have all of her small clothes hanging in her closet that she will never wear again. And her room is still set up and decorated, as if we can walk in at any moment and see her playing.. But maybe that is why she only needed to be here for 6 years, 9 months, 2 days, and 15 hours. Because she lived more life in that short amount of time, than most of us do in 30 or 40 years. And now, as hard as it may be, we try our best to continue on and help others the way she helped us all so much.
Because we knew Emma, we have been changed for the better.. We have been changed for good."
