It’s time to update the blog.
I have to say that updating her birth story is going to be
way easier then updating her current health status. But it must be done as this is the story of
our family and all parts must be included.
Well the parts that I feel will influence others.
So after we brought Miss Odessa Dei home we were able to
enjoy her for 3 days. We were able to
bring her to Tait’s office so that they could see her and they passed her
around to everyone. We were able to
enjoy her 2 hour need to be awake feedings.
In which she would only eat 1 oz before falling fast sleep but in 2
hours she was going to be awake and waiting to eat again. She went a couple of feedings where she would
sleep for 4 hours and then want to eat when she woke up. She was the sleepiest baby I had EVER
seen. She just wanted to sleep all the
time and I had NEVER had a baby that didn’t eat 4 oz by the end of the first
week we brought them home. Well little
did we know that these were all signs of trouble brewing.
Tait, Nikolai and I were all on our way home on Thursday
from Tait’s office Christmas party when we were talking about how orange Odessa
was and the fact she skipped 2 meals. We
talked about how we would wait until Friday because that’s when she was
scheduled to see her doctor the very next day.
But as we talked I think Tait could sense the concern in my voice and
suggested we call the doctor and see if they wanted to see her today or
schedule a blood draw today. So we
did. And sure enough they wanted to us
to go in and get a blood draw. So we
did. Took the baby in and then we
left. They said if the numbers were high
they would call us or whatever. So we
went on with the evening as if everything was fine. Well at 9 pm (my phone had died) my phone was
finally charged and we had a missed called from the doctor. So Tait answered the phone as he noticed we
had missed call and it was the nurse stating she was expecting us to come to
the hospital 3 hours ago but they couldn’t get a hold of us. Well we loaded up the kiddos to take them to
Helen’s and packed a few things to take to the hospital because both Tait and I
were ready to spending the night.
So she was she was put in the sun lamps. She did great all night. We didn’t sleep really well b/c Odessa kept
trying to take off her blindfold. But
after 12 hours her numbers were improving.
Well Dr. Lorenz came in and checked her out and said that she has a
significant heart murmur. So he said he
was going to order an Echo for her heart.
So we knew we were going to be home sometime later so it was okay. Well the Echo started and stopped twice b/c
there was only one tech there and he kept getting pulled in different
directions. Well they finished the Echo
which the Echo was about 4 hour total long.
So after they got that all done we waited for the doctor to come and
tell us what the results were. So we
waited and waited. Well it was about 6
pm and the doctor came in and said that he wanted to talk to both Tait and I
but Tait had stepped out getting some supplies b/c we figured we would be in
the hospital another night. Well the
nurse wouldn’t tell me ANYTHING. So I
called Tait and told him that he needed to come back right now b/c the doctor
wouldn’t tell me anything but wanted to talk to us both at the same time. So we knew it was going to be horrible
news. Well Tait and I had both called
Helen to let her know.
The doctor came in and said that she has a heart defected
called Truncis Arterious. This basically
means she has one artery in her heart instead of 2. It’s a VERY uncommon issue and that they
needed to take her right away down to Riley Children’s Hospital. Talk about a moment frozen in time. So they said that it would be a couple of
hours but Riley was on the way to come and get her. So we waited.
Finally they got there. We all
took turns holding the baby and telling her that everything was going to be
okay and that we would be in Indy shortly.
So they came and got her. Tait
and I made a quick trip to our house to get clothes and anything we might
need. And we were off to Indy.
By the time we got to Indy it was 11:40 pm and we were so
beat because of all the stress of the day.
Tait and I tried to answer questions as best we could but we were so
tired it was hard to kind of even concentrate on what they were saying. They started an Echo again and so Tait and I tried
to wait for them to tell us what was going on.
But sleep quickly overtook us and we slept until the next morning. The next morning we found out what we were
dealing with. We found out what the
matter with her heart was and what they needed to do. This was Friday but with everything going on
and there were no surgeons assigned to anything yet and so they said that we
would keep her stable and find out what was going to happen, but Monday would
be the day we would find things out. So
Tait and I were just waiting and watched our baby go from eating bottles and
awake to having her bottle feedings taken away.
She was still pretty sleepy but they were too concerned about it
yet.
So the weekend went by and little changes here and there but
overall she was stable and doing well.
Well on Monday they announced her surgery wouldn’t be until December 29th
which was an entire week away. Tait and
I were so disappointed because we were told that she has to have her surgery to
survive but they were willing to wait until the 29th to fix it b/c
of the Christmas holiday and staffing issues.
So we were at the mercy of the doctor’s. So Christmas Eve rolled around and we had
decided that we needed to go home for a couple of hours to see the other kiddos
at home. We knew Odessa was going to be
fine and we hated leaving her but we knew that the other three really needed us
b/c we had heard that they weren’t doing very well with what was going on. So before we left they moved our baby from
ICU to “step down care” b/c of staffing issues and nurses and since she was
doing so well that moving her wasn’t going to be an issue. So we moved all of our stuff over to the new
room and we pressed forward with our plans.
We went home and spend Christmas with the other kids.
Santa came and went at our house. The kids did get several things for
Christmas. During the course of the
night we had gotten two separate called about Odessa. The first call was regarding Odessa needing
some more blood b/c her blood oxygen levels were going down and they wanted to
help her heart out. So they did
that. Well after we got another call
telling us that Odessa was moved back to ICU b/c her stats weren’t improving
and they needed to watch her better. So
she was moved and they moved all of our stuff before.
Then on our way home back from Christmas they called one
more time and said that they had to sedate Odessa. They said that the reason why is because her
heart has been working way too hard for her body to take and so by sedating her
and intubation her it would allow them to control her air intake and be able to
medically help her heart. So we got back
and walked in our little baby asleep and on a ventilator. It was so hard to see and watch her. She is so little had has had some many pokes
and prods and it was downright scary to see her in this condition. So we talked to the doctor about her and all
of the changes they have had to do and the fact it looks like she is slowly
dying right in front of us because they haven’t done the surgery. We were told that that isn’t what’s
happening. Yes she needs the surgery but
she’s not dying. They need her to stay
very calm and keep as little activity as possible to help her heart. When she is moving around and awake it makes
her heart really work but her heart isn’t able to get the oxygen rich blood to
her organs b/c it’s just not working the way it should. So the last couple of days we have had ups
and downs but she is doing well. Her
stats today are really good. She has
been removed some medication and her stats are still good. They had had to do an Arterior Line for blood
draws they had to move the Central line b/c it was leaking. And they added another IV because they said
that they will need it when she has surgery on Monday. Everything is just leading up to MONDAY. It’s like the date that just won’t come! We just don’t want anything else to happen
before Monday so that she won’t have any delays.
We have spoken to the surgeon about the surgery and it looks
like what we will be dealing with. It’s
SCARY to listen to all the good and the bad for Monday. It’s scary to think that they won’t be
sealing her chest back up (her skin will be closed but her bones will not be
sealed) until after New Year’s which is HORRIBLE b/c of the freaking holidays I
hate holidays. It is official I mean
everything at the hospital is depended on scheduling it is so frustrating. I just want the baby to be on the mend so we
can go home and heal and put this behind us but it’s like we are facing this
big schedule that has to give everyone time off b/c of the holiday… well what
the hell I would like to be home and I can’t be b/c my baby is IN THE
HOSPTIAL! It’s just frustrating.
We found out also that this won’t be Odessa’s only surgery. She will actually have up to 4 open heart surgeries
throughout her life. She will need
additional surgeries to help her with the new artery (conduit) that she will
have installed. After the surgery she
has on Monday they will do another one sometime between the ages of 2-8, then
again between the ages of 12-18, then again sometime in her late 20s it will
depend on how fast she is growing. The
cardiologist will be her best friend growing up. She might not be able to have children in her
life it will depend on how her body and her cardiologist. So we’ll see what happens. We are just wishing that the surgeries are
over and that she is on the mend but time just doesn’t work the same way
here. It’s so frustrating and
scary.
Tait and I talked today about missing the other kiddos but
we know that this is just going to be a blink in the eye of time. So we just need to do what’s best for all of
the kiddos and not make any big decisions until we can get Odessa healthy and
home.
Tait and I have been staying at the Riley’s Ronald McDonald
House. We stayed there last night and were
really wonderful sleeping in a bed. So
hopefully we can continue to get good sleep and remain as a support for Odessa
and get the baby home.
So I won’t update again until after the surgery.
