Advocate Like a Mother, Part II

   Part One was from August 2018, when Emma had her first post-NICU surgery, getting her G-tube replaced since her stoma (tummy hole) was prolapsing. I was scrolling through Facebook one day, looking at my old photos of Emma, and I saw that one was blurred out with a "sensitive" notice on it and you had to click twice on it after an "images may be disturbing" warning popped up. I was thinking, "What the heck would I have posted for something like this to be attached to my photo!?" It was the one of Emma's stomach because her stoma had stretched out so much that it was pushing through to the outside!!! Poor baby!!! She was not much more than a year old at that time, and we definitely needed to get it taken care of. You can see that amazing photo, and read about her/our three day hospital stay, and how Michael and I had to advocate for her when the doctors thought they knew our daughter, who has very specific medical and genetic conditions, better than we did. *eye roll*

   Two other big times I can think of that we advocated for her were when she first got to Michigan for her big 3D splint airway surgery, with a completely new set of staff who had never met her. I was getting frustrated and began crying when a male nurse wouldn't let me change Emma's diaper even though I felt sure that is what was making her cry. And with all her crying, she was in the bad stage of constantly passing out. When he saw me crying he said I could change her diaper, since nothing he did was working, and once she was clean she instantly calmed down. He quietly commented, "...I will make a note of that." The first few days I felt like coming to Michigan was a big mistake, but after we were there a week and we had better/nicer/ more caring nurses and met Dr. Green, we felt like we had made the right choice for our fragile daughter. 

  And the other time of advocating for Emma was so scary. Michael did most of that while I just stood there crying. While in Michigan, Emma had been in their pediatric ICU for 73 days, her body getting used to the larger tubing and receiving more air with each puff and breath from the ventilator. However, when we got back to Orlando, mid February 2018, they put her back in the NICU for little babies (she was eight months old at this point), since all of the nurses and doctors knew her there, but it was also where they use smaller tubing. One doctor, who never worked with Emma much before, could not wrap his head around how Emma needed the LTV ventilator instead of the "better" Trilogy vent and said the size of the tubing didn't matter. After Michael nicely argued and we pleaded for too long, he agreed he could try it (just to prove us wrong) and finally Emma's stats came down and she could breathe well again. Ugh, I can still see her tiny sweaty face looking at me, maybe because I have a picture, but I do remember sitting on the couch in the living room cry-praying that she wouldn't die after everything we had just done for her in Michigan!! *deep breaths. everything is fine. that was a long time ago*

  The sad, sweaty picture isn't in that blog post, so I'll put it here. We can't forget what we have been through!! What Emma has been through!!! She's the bravest of us all. (Followed by a happy photo.)

   Aaaanywayyy... I haven't even gotten to the current issue. Ironically, the current issue starts in December 2022. I was looking through old posts to see if I had anything to link back to, but considering I only wrote one post in 2023, the answer is no. And my two 2023 Recap posts for January and February that I wrote recently do not mention it because it was a doctor appointment from the month before. So.. from the tippy-top!

   In December 2021, one year even earlier, before Christmas.. which I do have a blog post for.. :)
We drove up to Delaware for the second time so Emma could get her hip spica cast removed after her leg surgery, called a Bilateral Distal Femoral Osteotomy. Breaking that down it means: cutting the femur bones, on both legs, away from the center (from the knee area where she has no knee caps). She came out with Parmesan-crusted Tiny Tim legs due to lack of use for the previous seven weeks. A private company within the hospital made skinny leg braces for Emma so she could no longer hyper extend her legs since that is what the surgery was trying to prevent. They did not put in little knee caps (she was born without them- common for Meier-Gorlin Syndrome), but the doctors shortened the bones so they could move around the ligaments and her legs could finally bend down/ the "normal" way. The surgery worked well and for some time she was able to bend her "knees" down properly with barely any hyper extension. But since she gained muscle in her legs overtime and the braces no longer fit, we stopped putting them on her and she stretched out those "new" ligaments. She can still bend her leg the right way very well, at least 80 degrees in both, maybe 90 in her left leg. But she can also hyper extend them back about 45 degrees. 

   I called our insurance company in the Fall, to let them know that Emma needed new ones since her legs had gotten bigger, but they told me that it was not something that would be covered "because it is not medically necessary". Of course that made us really mad because they don't know Emma! They can't see her legs! They don't know that she is four years old (at the time) and can't even stand on her own. 

...... 05/09/24, today I cried a bunch after reading one of the latest emails from Jeremy. I said that FL Blue "couldn't find" one of the documents that he had sent them from me from months ago and needed me to sign and resend a new one.

Emma's Memorial (March 2024)

   There were so many people who asked me when and where her funeral would take place because they wanted to be there for it because they loved her so much. My family members who live out of state, previous co-workers from 911 in Orlando, nurses and therapists who had helped Emma a lot while she was in the NICU for the first year of her life, our current neighbors, and more. However, we wanted to keep it a really small memorial and the total amount of people was ten. Me, Michael, my parents, his parents, his older brother and his wife, plus Emma's 1st grade teacher who we have become very good friends with, and the minister. I was surprised that the memorial lasted an hour and a half. It was very sad, but very nice. Even though the minister didn't know Emma, he was still able to say a lot of really nice things since he watched the slideshow that we sent in a 450 pictures for. He showed up 30 minutes early, as did Michael, Carolina (her teacher) and I. On the drive there, Michael told me that he probably wouldn't cry because he felt so numb, "and sick" I added. But we were sobbing almost the whole time! I wasn't sure if I was even going to be able to say my eulogy, but I'm glad I did because the minister said it was one of the best ones he had ever heard!! :)

*****

Here is the eulogy that Michael wrote:

&

Here is the letter to Emma that Carolina wrote and read:

*****

   Lastly, Michael's dad presented us with a photo album that he put together! Michael's mom said he went to Hobby Lobby all by himself and picked out the flower stickers, Bible verses, and printed the photos all by himself. The photo album was documenting the vacation in the mountains that we had all been on in November 2016 with Michael's grandma and younger brother when we told them that I was pregnant! At the end he had put in a few of his favorite photos of Emma. It was very lovely.

So Many More Stories to Tell

  ***** blog post is not complete yet 

--- I still need to add photos --- 

but I can't "redraft" this since it already posted.*****

 

 

SHIELD YOUR EYES!!!

 

 

 

PLEASE DON'T READ IT YET 

 

UNTIL THERE ARE BEAUTIFUL PICTURES!!!

 

 

 

 

 **********

 

 

 

Two of my very best friends, Lindsey and Mia, sent us the most gorgeous canvas a few days after Emma's memorial service, which took place on Friday, March 22nd.

  While looking at it, I thought of this little story that possibly occurred, which caused me to start crying. The first paragraph is real, from the early morning of her passing, on Friday, March 15th:

  Michael leaned over our daughter with a stethoscope and listened for a heart beat. Her chest was still rising every five seconds because the ventilator was doing it's job by blowing air into her body. He moved the diaphragm of the stethoscope around different parts of her chest as I cradled Emma's head in my hands, my lips close to her pale skin. He shook his head and gave me the worst look, saying he couldn't hear anything. We waited a few moments longer before he told me that he was going to turn off the ventilator. I nodded. We all burst into tears and after hugging Michael, I crawled over to my mom who had been praying so hard with her head on the carpet.

  Emma stood on the clouds, watching us through a TV sized opening, as a handsome man slowly made His way toward her and knelt down on one knee beside her. She turned to Him. "Are you Jesus?"

  "Yes, Emma, I am. We are very happy to have you here in Heaven."

  "But what about them?" she asked, pointing. "They are so sad." Emma didn't even realize that she was speaking out loud for the very first time, while she had been mostly non-verbal for the full six years and nine months of her life.

  "For now, yes. But they will never forget you. They will always love you and cherish every memory they had with you. You are so very special to so very many people, Emma. You completed your purpose during your time on Earth, which is why you are here now."

  Emma looked up at Jesus, as He stood, then turned back to what was happening. Michael and I had changed her pajamas into cleaner ones and took turns holding her while we waited, devastated and heart broken, for the Hospice nurse and funeral home driver to arrive. 

  "Take my hand. There are many people who are waiting to meet you."

  Emma placed her small hand in Jesus's much larger hand, and He held her securely. As they began to walk away, Emma took one more look back at us and my parents, as the view to Earth faded away, and she was able to enjoy the beginning of her new medically-free life for all of eternity.

**********

   I have made a long list of all of the blog posts that I want to write about. I'm sure there will be many more over the years, but these are the first ones that came to mind. I'm not sure if I want to write the sad, more detailed hospital posts while they are still fresh in my memory first, or skip over them and talk about some older happy stuff first.

 

--  Slow Dream House Build (2021-2022), this is partially written, in my "drafts"

 

-- Custom Medical Solutions (title by Michael! October 2022)
** there will be a link to Emma's "Wheelchair Trials" blog post from July 2022
Her little wheelchair arrived on September 26th, but I never posted about that either

 

 

 

-- Hunkering Down in Orlando for Hurricane Ian (Sept 2022)
This might be a two part post because there are a lot of pictures. I apologize to everyone who was negatively affected by this hurricane, because Michael always says, "Oh man, that trip was so much fun!" It was, but we are fortunate that he was able to book us in a big, fancy, sturdy hotel. :)

 

-- Halloween Fun!! (end October 2022)
This will also probably also have two parts since we went to the Zoo's Creatures of the Night event for the first time, and I also found a random church's trunk or treat we could attend. :)

 

-- Family Reunion with Nana/ Rooted and Grounded (mid Nov 2022)

 

-- Moving into the House/ Little Thanksgivings (end Nov 2022) 

-- Belated Christmas with MDZPH* (January 2023)
*Mommy, Daddy, Zach, Peyton, and Helena

-- Starting home school! ESY with Dawn (March-July 2023)

-- First Grade with Carolina (Sept 2023- February 2024)

 

-- Atlanta Convention/ Gardens with Lindsey & Walt (May 2023)

 

-- Emma's 6th Birthday (June 2023)

 

-- Two Girls Being Big Stuff (Nov 2023)
We bought a second card, and I was able to start taking to Emma places by myself.
This was mainly for doctor appointments, but we went on a few small errands as well.

-- A Wicked Thanksgiving! (end Nov 2023)

-- My Mailbox Buddy (2022-2023, will post between Thanksgiving & Christmas)

-- Crabby Christmas (haha, Dec 2023)

 

-- 7 Years of Miracles, random "God stories" of survival (2016-2024, her whole life)

 

-- We Almost Forgot What the Hospital Smelled Like (mid Feb 2024)

 

-- Emma's Last Hospital Visit (end Feb 2024)

 

-- Home Hospice (March 2024)

 

-- Emma's Memorial (March 2024)

 

-- In Honor of our Honey (May 2024)
This post will talk about the things we are doing now to help others, with the help of the skills we learned over the past seven years by taking care of our sweet angel. 

 

Also one about the appointments for GI where that doctor (here and the one in Orlando) always says that she needs to gain weight, but one or two pounds added to a girl this small makes a big difference. As well as information for a blog post on an Autism evaluation we had scheduled and a Speech/Language appointment she had last year. Aaand.. "The Reign of Snaggletooth", "Emma Being Emma (Our Silly Goose)", "Sasha: Learning to be a Good Big Sister", and many more posts over the next few years talking about how wonderful our life was because of her, and showing off how strong and smart she was. Plus I was so many pictures of her. It wouldn't be fair to hide all of them on my phone forever. :)

Five Weeks Downhill Fast

   I cannot thank you enough for your generosity and love during this completely heart breaking time. Some days are okay and we can make it through, and I can laugh during the day. Other times are hard to get out of bed and I cry in her bedroom, unable to believe this has actually happened. She was so little. It's hard not to be angry at times- at God, or at the two new Pulmonology doctors who didn't listen to us when we told them what she needed (specific medicines that they denied us) back in November and December. It may have only helped her for a few extra months, but still.. playing the blame game doesn't bring her back.. either does feeling guilty because there is nothing we could have done to save her in the end.

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. <<<

   Mere hours after I posted that blog ^^, Emma had her first bad "blood episode". Blood clots coming from her stoma (neck hole) and a lot from her airway when we suctioned her. It covered the top portion of her pajamas and really freaked us out. We called 911 at 2:30am and they rushed her to the hospital - Johns Hopkins/ All Children's in St. Pete (which is unfortunately 50 mins from our house, without any traffic). Luckily the bleeding stopped once she got into the ambulance and there was no more at the hospital, she only had to spend one night and we brought her home late Feb 13th.

*** 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. 

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."