No – that does not refer to Ellie. Our sweet girl is doing rather well these
days. Praise God! She is eating like a champ right now, too. In fact, we’ve been given the green light to
take away two of her five daily tube feeds because she’s doing so well eating
by mouth that we’ve replaced those calories.
I’m in no hurry to pull her G tube.
That baby is just waaaayyyy too nice to have when Ellie is sick. If we want to push Pedialyte while she sleeps
to keep her hydrated, we can. If we want
to slow down the rate of her feeds because she’s not tolerating them, we
can. If we just need to get food in her
when she’s barely awake all day… or need to push nasty tasting meds, it’s not a
problem. Sooo… the tubie is my friend
and while I’m thrilled that Ellie has a healthy appetite and she’s taking lots
of foods by mouth, I’m in no rush to get rid of her tube.
She’s progressing well in physical and occupational therapy. She’s kind of a rock star all around. Her swallow study that she had earlier this
month went beautifully… no concerns at all.
She also had a sleep study… we’ll get results next week. The sleep study will determine if she’s ready
to be off of the ventilator at night.
This would be a huge step for us.
If she’s ready for that, we can start to work on capping her trach
during the day (which would mean she’d be moving all of her air in AND out of
her mouth). Her speaking valve allows
her to breathe in her trach, but out of her mouth. Capping it would be a whole new battle… but hopefully
a smooth transition for Ellie. Once we’re
to that point, we can look at a capped sleep study… and if that’s great… surgery
and decannulation (removal of her trach).
Please know that this is assuming the best possible scenario over those
four big transitions… and those transitions each take quite a while. But it’s progress in the right direction, at
least. We know that Ellie will need a
pretty big surgery on her trachea before decannulation is even a far off
thought. The earliest they’ll think about
doing surgery (assuming all aforementioned steps are successful) is next
summer. They really only do the surgery
in the summer because of the risk of infection during the school year. So… if Ellie is going to be trach free by her
2nd birthday, we have to keep pressing forward on all of these steps
and we need to stay on top of progress.
One step at a time… one step at a time. But that’s the overall goal, just so you know.
Our happy girl just before her 2nd sedated procedure in September.
Can you feel her joy?
She’s been semi-healthy lately… healthy in Ellie’s
standards, at least. Her 1st
outpatient procedure just after her birthday landed her in the PICU again. There was a tear in the lining of her trachea,
making the risk of infection high. She
shocked her ENT when she was doing so well the next day. He told us to go ahead and go home (we were
supposed to stay for a week), but to keep her isolated for the week. We have all of the equipment (and staff) on
hand at home to handle quite a bit, which is a huge relief. It’s much safer for her to be home and just
exposed to the germs that are in our home than to be in a hospital full of sick
people. We’ve also dealt with a few
bouts of c diff lately (with Ellie). C
diff is scary stuff. Because she has to
be on antibiotics so often, the good bacteria gets wiped out and nasty stuff
like c diff has the opportunity to take over.
No good. We keep her isolated in
the house when this happens, too. So we’ve
been hermits here and there for the last few weeks, but we’re doing our best to
keep her healthy and keep her safe from others’ germs while also keeping her
icky germs away from public places when she’s sick. Always an adventure, right?
She’s had her birthday celebration, a trip down to the
Ronald McDonald House, countless appointments and tests, two procedures, big
accomplishments in PT and OT, HUGE progress in oral intake, and more smiles
than we could possibly account for in these past weeks. I’ve been slow to update… for that, I’m
sorry.
That brings me to the next portion… and it is hard for me to
write these words. It’s been incredibly
difficult for me to blog lately because I’m battling some serious demons in my
head. I’m not kidding. I’m dealing with a lot of displaced anger…
the simplest things are cutting me deep these days. Between anger and isolation, I don’t always
know how to feel or what to say. I feel
like an island most days. Blah.
We’ve spent the last year living moment to moment. We had to be present at all times. We had to be alert and had to stay on top of
everything. We… changing this to “I”
because I don’t want to throw Brandon under the bus here… I had to take it all
in. Everything. Ellie went through a lot in the last year and
every day, I was living in the moment and taking in what was being thrown at me
that day… processing it mentally and moving forward. A year ago, Ellie started storming for the
first time. I didn’t know what was going
on, but I was diligent. I took notes, I
wrote down details of symptoms and did research. I was frustrated for six weeks before we had
an answer to something that was so scary (I know many people wait a lifetime
for answers… and I can’t imagine, because six weeks was exhausting). I sat in rooms full of beeps and montiors for
months – I lost more nights of sleep than I got. I prayed feverishly, I heard a world class
surgeon tell me that my daughter would likely die in the operating room a few
days before her first heart surgery. I
endured and endured and endured. Was it
all worth it? You bet! Did we end up with a huge miracle at the
end? Absolutely. Am I grateful each and every day that the
light in the Ronald McDonald House was never lit in memory of my sweet
girl? I praise God every day for
that. But did I deal with the stress and
pressure of it all as it was happening?
Not at all.
Over the past two months, my mind and body have finally
started to cope with what we’ve been through with Ellie. I praise God that Ellie is too young to ever
remember what has happened to her. But
me… my scars are becoming more visible each and every day. This kind of trauma takes its toll. I’m realizing now how much of a toll it’s
taking. Some days I’m battling mild
depression… some days I just want to quit at parenting or marriage… my head and
body ache from extreme amounts of tension surging through the muscles in my
neck and shoulders (ask my chiropractor and neurologist… I’m a mess). Some days I sit like a vacant shell of who I
used to be because there’s a lot of anger and loneliness involved in this
journey. There are many days where I
feel like the only people who truly understand what this feels like are so far
away (those that we met in the Ronald McDonald House). And there are many days when I don’t feel
like I can unload this burden on them because a handful of those moms are
dealing with life without their child… and that’s more than I could ever
imagine.
I guess I’m unloading this now because it’s time for
healing. It’s time to recognize that I’m
angry that some people can pick up and go on a whim. I’m jealous that some people can call a
neighbor, family member, friend, etc. to watch their kids for them while they
go do something. No one can watch Ellie…
no one… well, except her nurses. I am
even angry when I see other kids doing so much more than Ellie is. Don’t get me wrong, I’m not angry AT other
people… I’m angry that we aren’t those people anymore. I feel alone in that very few people
understand this struggle… or maybe I’m not listening hard enough to those
around me who DO understand.
And on top of this, I’m angry at myself for being angry… I’m
angry at myself for not always feeling blessed.
I know in my heart that we’re incredibly blessed. I know that Ellie’s situation is as good as
it could possibly be. I know that she’s
a survivor in a world that’s so dark and scary.
So many babies have gone before her to their forever homes in
heaven. Why can’t I be overjoyed? I’m not sure.
I AM happy, I AM thankful… but part of me is very broken right now… part
of me is very lonely and sad. Part of me
wants to run away and hide. If you’ve
seen me in the past few months and thought I’ve seemed vacant, I have. If you see me in the next few weeks and think
I’m acting weird… I probably am. I’m a
busted up mess physically, emotional, spiritually. I’m working on it… but please, be patient
with me. Know that I love you all dearly
and that I’m trying to cope. I’m trying
to find my way again… find that giddy hope and carefree happiness that I used
to have. It’s gone right now, though…
and I’m kind of fragile. If you see my
husband, thank him for being incredibly strong for me. He gets the brunt of my moodiness, anger and
doubt. This road has turns and dips that
I couldn’t have imagined before. This
road has darkness even when things are going so well. This is not somewhere I ever thought I would
be… but I’m here. I’m sharing this to
raise awareness of the baggage that comes with trauma. I know other people feel this… which is sort
of comforting, but painful, too. I know
others who have been in a similar pit and are doing better… so there’s hope in
that. There is just so much that has
happened that I wasn’t able to process in the moment. I’m thankful today that we have a time of
calm… even if that means that it’s a time when the demons can surface. Pray for us as we battle these demons,
please. I know there is light at the end
of this tunnel. I know it.
Okay – thank you for letting me unload that heavy
darkness. I do have some light and happy
photos of our happenings to share if I haven’t bummed you out too much to
enjoy:
Every tubie should have a cupcake pad for their birthday, right?
Serving brunch at the RMH. Thank you to all of Team Ellie Bug for supporting us. We brought down nearly 50 gifts for the other children, plus financial donations and a few gallons of pop tabs... thanks to YOU. You're the best!!
Little victories: she can finally sit up in a shopping cart. Yahoo! No more infant seat for us.
BIG victory: drinking from a straw. This took 4 months of work, y'all... she's amazing.
Selfies before her 1st outpatient procedure in September... didn't go as planned and we were admitted. Dang it. She's such a stinker.
When we were allowed to come home early from the PICU, we had to hunker down for a week until her follow-up procedure. We could take her out of the house... but couldn't go to stores or church or anywhere else where she'd be exposed to many people. We had a family movie night, played at the park, took school pictures of the kids... hermit stuff.
A very special balloon release for a very special little boy's 11th birthday.
We love you and miss you every day, Jared.
Ellie's ENT, Dr. Elluru, giving her a pep talk before her 2nd procedure. He said she was too cute to ride in the crib to the OR, she was carried. We love this team!
Ellie's 1st Buddy Walk. How awesome!
She was given a plaque for being the youngest buddy in attendance.
Playing with toys waiting for her GI appointment. This girl had 6 appointments and 1 day-long procedure this week. Talk about exhausting!
All wrapped up for her sleep study. We had to send this pic to her buddy Tillery.
Tillery rocks head wraps in the most adorable way.
Guess she found something interesting between her toes
A superhero bash at Steinke Family Chiropractic.
Ellie giving Aunt Nicki some snuggles at Fall Fest
Ummm... isn't she the cutest Raggedy Ann in the world?
The whole fam at our 1st Halloween party of the season. We have: Carmen San Diego & Waldo, a Ghostbuster, Inspector Gadget, and sweet lil Raggedy Ann
