It’s been a week since I’ve posted an update, but
fortunately, it’s been a relatively uneventful week for Ellie. She’s still storming everyday (usually more
than once a day), even after doubling her dose of propranolol and adding
another medicine (clonidine) to work as a preventative measure as well. I think her storms are shorter and less
scary, but they’re still happening. I
know that the neurology team has consulted the staff in CICU, but they haven’t
been down to chat with us on what a plan might be moving forward. Now that we’ve eliminated brain injury and
oxygen deprivation from the possible causes, it’s possible that her pulmonary
hypertension is to blame for her storms.
We’ll have a better understanding of that once she’s through her first
heart surgery. If we get her pulmonary
pressure under control and she’s still storming, well, then we know it’s just an
extra special little bonus that she shares with us daily! Let’s hope the banding stops the storms.
As far as the trach and g tube go, Ellie is doing well with
both. It’s still terribly uncomfortable
(for me) that she doesn’t make sounds when she cries, coughs and gags. I know I’ve said that every single day here
and our nurses are tired of hearing it, surely – but I just can’t get over how
unnatural that feels. Poor bug cannot
send her distress signals. We have
started training on trach care, though… just taking the first steps into a
pretty intense itinerary of trainings.
On a very happy note, Ellie is being weaned off of the ventilator. That’s fabulous! She spends 4 hours on CPAP settings (CPAP
stands for continuous positive airway pressure) which allows Ellie to breathe
on her own with a little support; then 4 hours back on the ventilator to give
her some rest. Even on the ventilator,
she only gets 23% oxygen (room air is about 21% oxygen), which is a good sign
that she’s doing most of the work on her own.
Ideally, we would go home with a CPAP machine at night and just a trach
collar during the day (where the stoma is kind of capped or has a little “T”
off of it). This would be the absolute
best case scenario… and what we’re hoping for, of course.
Our pretty little girl today... love those lashes.
If this was in color, you could see how red her hair is!
Our weekend was nice.
Our boys came down on Friday night and stayed through this morning. It was wonderful to get to spend so much time
with them and we look forward to getting them back on Christmas Eve, too. They are rotten little monsters, though… in
the wonderful way that little boys are always rotten little monsters. They are so full of life and energy – and
questions… let’s not forget about the endless questions! Friday night we had dinner together and got
to play and snuggle. We also let the
boys open a few things that had been sent to us through the week. They were super excited about this. We told them that Santa had stopped in to see
Mommy and told me that they’d been so good for Grandma and Grandpa that Santa
wanted to leave these gifts and remind them that he was watching them and was
proud of them for being tough boys. Saturday
morning I sat at breakfast crying because I felt terribly torn because I wasn’t
able to sit with Ellie all day. I know
that our boys need their mommy, too… and I have to give them my weekends. They deserve at least that. But it’s hard to spend time playing and
laughing and going on “adventures” when you know your baby girl is lying in a
bed across the street in a room alone.
Ugh! Once she’s out of ICU, the
boys will be allowed in her room, so that will help when we’re in that
boat. Lance told me that morning that he
has two mommies (me and Grandma Schroer).
He was very matter-of-fact with this.
Did my heart break a little? Of
course. But at the same time, this was
wonderful to hear. I know that our boys
are being well taken care of and I know that they’re enjoying every day. I know they’re happy and I’m incredibly
thankful that our family is so supportive.
I’m amazed that our families have just been able to absorb two little
kids for the past month… that’s not a small task. And it’s not just been a month. They’ve taken our boys each time that Ellie’s
been hospitalized and when I had appointments with specialists during my
pregnancy. Our family will continue to
have them while we get Ellie through this ridiculously long stay this
time. We couldn’t be more blessed by our
family and friends!
Looking so peaceful after a bath last week.
Daddy admiring his pretty little girl
Saturday night we took the boys to see the Holiday in Lights
tour through Sharron Woods – which was awesome.
Sunday morning was a lazy morning with breakfast and movies. We went to BWs for lunch (the boys said we
were eating buffalo) and then back to the Ronald McDonald house for naps and
such. It was nice to have a day of rest
and relaxation together. This morning,
the boys were excited to go back to Grandma and Grandpa’s house. I cried in the bathroom, because as much as
I’d felt torn on Saturday for not being able to spend the day with Ellie, I
also felt torn today because I knew we were sending our boys away for a few
days because we couldn’t be with Ellie and work and be the parents we needed to
be for them. Maybe I’m becoming an
emotional wreck… dang it. We’re doing
well, though, as a family of five. We’re
trying our best to keep it together and be the parents we need to be for all of
our kiddos… but this situation where Ellie is in ICU is making that balance a hard
one. All in good time, all in good time…
Kaleb & Lance at BWs (Lance said he was a vanpire... yes, VANpire).
Sweet bug on Sunday
The boys playing with Daddy at the RMH
Aaaarrrrrggggghhh... Kaleb donning pirate stickers
I can’t even begin to complain about the troubles we’re
dealing with, though. This has been a
very hard week in the CICU. In this
unit, you’re not allowed to eat in your rooms, so all of the parents eat meals
in the lounge down the hall. This is a
little bit of a pain, but at the same time, we have a chance to meet other
families and share stories. We have 5
families we’ve gotten to know pretty well in the CICU world. I’ll refer to them by the baby’s name. We’ve met the families of Aberdeen (Abby),
Jayden, Christopher, Chance and Kendall.
I don’t feel right going into details about any of their stories,
because frankly, they’re not my stories to share. But I will say that two of these families
lost their little ones this past week and my heart is broken for them. One momma, in her infinite strength, told me
“we prayed for God to heal him and touch him and make him whole. And He answered those prayers. He’s perfect now.” This momma is wise far beyond her years.
The realization of how fragile our little ones are is
scary. They’re resilient little boogers,
yes, but the stories of how situations can change in an instant leaves me
sleepless some nights. I’m thankful that
these families both have strong faith backgrounds because I don’t know how they
would get through this time without God.
Please continue to pray for all families with kiddos in the hospital…
they all need our prayers.
To follow this heartache with a very positive note, two
other families that we’re friends with were able to bring their babies into the
step-down unit this past week. They’re
out of CICU! This news is always met
with celebrations. We hope to be moving
that way in a few weeks. The fifth
friend… well, he’s our next door neighbor and he’s still hanging out here with
Ellie. They’ll both be in CICU for
Christmas this year. We hope for a much
less eventful week this week, for sure.
Ellie should go in for a PA band (a band around her
pulmonary arteries) the week after Christmas.
So until then, she’s hanging out.
In rounds this morning, they decided to take Ellie off the ventilator
altogether this morning and leave her on CPAP all day long. I’m excited about that. So far, she’s rocking it! They also said that she’s been able to go
without morphine for 4 days, so they took away the order for morphine – another
victory! The fewer pain meds, the
better, in my opinion. She’s tolerating
her feeds well and is sleeping comfortably as I look over at her. I told the team this morning that they are
making me a very happy momma (for taking her off the vent, for taking the
morphine off the list, and for being just one day away from stopping
antibiotics – yahoo). She is one sweet
little bug, that’s for sure.
A little side note, if you drink from cans (pop (soda),
beer, etc.), I encourage you to save the tabs and donate them to your local
Ronald McDonald house. I can’t begin to
tell you how amazing the RMH has been for us.
There are over 400 regular volunteers here and they house 78 families
(and have a lengthy waiting list for rooms).
This place is amazing and full of love.
As for tabs, last year, they raised $42,000 by taking in donated pop
tabs. Just sayin’… sounds like an easy
way to help out an amazing cause.
Thank you all so much for following along. I know that we ask for a lot of prayers... but know that your prayers are holding us together and lifting up the other families we meet here. They sustain us - more than you know. We love you!
No comments:
Post a Comment