We always say we live on Jillian's schedule. All plans are flexible and tentative. This is just life with Jillian.
Last
year we made some changes to when we celebrated Christmas. Jillian's
first year we crammed seeing everyone into 2 days... we spent more time
in the car then seeing people. People were mad because they did not get
to see us much. I cried a lot Jillian's first Christmas because doing
everything we just so stressful. Last year we started rearranging who we
spent time with when. It was a lot more relaxing. This year it was
spread out even more.
12/20- Christmas the three of us at home
12/21- Christmas with Brent's family at our house
12/22- Christmas with Jaime and Jason and Dan
12/23- Brent and dad had band practice at Church
12/24- Christmas with my dad's family after Christmas eve service
12/25- Christmas morning at my parents and then lunch at my grandparents
12/26- Christmas with Patel family
Christmas
with the three of us was calm and relaxing. She loved taking the
morning slow and spending time with mommy and daddy. We got her the Step
2 Love and Care center. It it is baby care center. I was really excited
to find something that was the size of a play kitchen and had lots of
things to do but was not a kitchen. It has a place to "wash" her baby's
clothes, change their diapers and hang their clothes. She is loving
being a little mommy! She even got a new baby doll in the mail that day
for her birthday, and she was so excited to take care of it. I loved
having a day in my pajamas. Brent went to an Eagle ceremony in the
afternoon and then once he came home we went out in our pajamas and
looked at Christmas lights in Lake Geneva. Days like that make me smile.
Sunday
we got up and went to Church and then came home and got ready to have
people over. I made dinner for everyone. I love to cook and I love when I
have the time to make a nice meal for people. Jillian had fun having
everyone over. She loved helping everyone unwrap their gifts.
On
Monday we had Jillian's two year check up. Her doctor and I talked
about different specialists and what is going on. Not too much to report
for that appointment. It was just kind of a check in on how everything
else was going. We then to therapy. She struggled in PT again this week
(she did the past two weeks). She is really having a hard time with
doing PT tasks that she was starting to do better with. She works hard
though! She did ok in speech. Her therapy place gave her a little duck
clip that has a little shirt on that has their logo on it. The little
duck clips to her feeding tube backpack. Monday night Jaime, Jason and
Dan came over to celebrate Christmas! Jillian got red cowboy boots like
Ted's on How I Met Your Mother (we all use to watch the show together).
It was a fun evening with friends and we always end up laughing so
hard!
Tuesday Jillian and I spent the morning getting
ready to head to Kenosha, and Brent had to work. Once Brent got home
from work we headed into town. We headed to my parents where Chinese
food was waiting for us. Dad and Brent went out to Church and the rest
of us hung out at the house. I was sleepy and not in the mood to do
anything.
Wednesday morning was a rude awaking. Brent
got up to do her 6am pump fill and meds. As he gave her one med she
vomited. Strange, I know, but vomit is not totally strange in our world
so we all tried to go back to sleep. As soon as everyone just got back
to lay down she vomited again. By this point we were a little more awake
and could tell that she was not breathing well (like a respiratory rate
of over 60) We took her to the livingroom and started a neb. She was
super lethargic and her heart was racing. An hour after the neb her
little heart was still going over 150bpm and she was barely moving. I
can do respiratory stuff at home, but I was not comfortable continuing
to give nebulizer treatments to a child's who had a heart rate that
high. I do not remember any time before that Jillian has had a heart
rate that fast. We debated where to take her but we knew a walk in would
not touch her so we headed to the Aurora ER. It was not very busy when
we got there and they got us right to a room. The staff was great and
quick. They did a nose swab for the flu and it came back positive for
influenza type a. I had not even thought of that when we came in. At
home her temp was a 99.9 and at the hospital is was 101.1, so not really
high temps at all. My main worry was her little heart. Sleeping it was
ranging from 130-160 and awake (laying lethargically and not talking) it
was 150-186! That is super high for her! Anywhere you touched her all
you could feel was her little heart racing. She was wheezing in the ER
and her pulse ox was raging from 91-100%. There was talk of transporting
her to Children's but it was decided that we would start tamaflu,
predisone, do nebs every 4 hours, and alternate fever meds and try to
keep her home for the holiday. We made the deal with them that if she
got any worse we would bring her back and they would transport her to
Children's. We got back to mom and dads and everyone got ready for
Church but Jillian and I. It was so weird not going to church on
Christmas Eve. I missed seeing everyone and I missed the Christmas
tradition but I was were I needed to be. Around 4 pm Jillian hit a rough
spot her heart rate jumped back to 185 and her temp started to climb as
she started to wheeze. Thankful after another round of meds I was able
to get it back down. She spent most of the night wanting to lay on me
while I laid as still as could be. My dad's side of the family was
suppose to have Christmas at my parent's house however Jillian and I
were there so they moved it to my aunt's house.
Christmas
morning Jillian did not go back to sleep after her 6am neb. Combine
nebs and predisone she acted like she had ants in her pants. She would
lay down someplace because she was tired but then her little legs would
just kick and shake. We took gifts slow this year. Normally my
grandparents stop by in the morning but we told everyone to stay away.
Jillian would open something and then rest for a bit. It was really laid
back and I think it was the longest gift opening has taken in a long
time. She was funny though because she kept taking the wrapping paper
and lining it up in the kitchen. No one is sure why but it was cute. We
then got ready to go to my grandparents' house. Brent took the first
turn at staying home with her. Brent's grandparents stopped by for a
little bit to say hi. Then my dad went back to the house so Brent could
go to his parents' house. We all just took turns taking care of her to
try to limit her contact with other people. Her fever came and went
during the day and we continued to do nebs. When she went to bed her
fever started to spike again but thankfully her heart rate stayed down.
Friday
morning Jillian stayed at the house with the guys while my mom and I
went and ran a couple of errands. Jillian took a good morning nap
(strange for her). In the afternoon my mom's best friend Sandi came over
as well at Todd, Dan and Dan. We had a feast that night for dinner.
Jillian was sleepy and a little crabby but considering all did a great
job. She did neb treatments but her temp was gone all day.
Saturday
morning we all laid around the house and did not do much of anything.
Jillian took a morning nap again and was pretty grumpy. She did a neb in
the morning but otherwise her lungs did well. In the afternoon mom,
Jillian and I ran to Milwaukee to pick something up. She did great at
first but her stamina was short and she grew very crabby. She was crabby
and fussy most of the rest of the day. She went to bed early and the
adults played Ticket to Ride.
Sunday morning Jillian
got up and seamed happier. We tried church however part was though the
sermon she started to scream. I took her out to the hallway where I
walk/rocked her for the rest of the service while she moaned. We went
back to my parents house and she took a 3 hour long nap (CRAZY for
Jillian). Once she got up we packed our stuff and headed home. We got a
new bench for our front door (holds all of Jillian's on the go stuff),
new dvd storage and Brent got a night stand (he is still using plastic
drawers he had in his dorm room). Sunday night was building night here
as he got the dvd storage and bench built. Jillian mainly hung out on
the couch and watched him, or wanted to sit on his lap while he worked
on stuff.
Today we went to see the nurse practitioner
for Jillian's follow up. She said she looks great and the flu is gone.
She said that Jillian has bounced back great and her main thing is just
rebuilding her strength. It takes Jillian a lot longer then normal kids
to bounce back once a sickness is gone. She has not had a fever since
Christmas night and has been neb free since Saturday but she is still
really sleepy. She had PT and speech today and you could tell she was
sleepy but she tried hard and everyone went easy on her. Right now she
just woke up from a 2 hour nap, and is now laying on the floor with a
blanket. The good news of today... she pooped! It was the strangest poop
ever, but I wont gross you out with the details.
Also,
I want to say how much I LOVE our ped. She called me this afternoon
while Jillian was napping. She has today off but was looking at some
stuff for work. She noticed that Jillian was in the ER over Christmas
and she wanted to make sure that she was doing better. She did not have
to do that. She had the day off, but she cares a lot about my kid an
wanted to make sure Jillian was ok. This makes this mommy so grateful
for such a good doctor!
Thank you for all of the prayers! It was much appreciated and truly felt. This could have been a lot worse but I am grateful that she got meds early and was able to mach such a great bounce back.
Christmas the 3 of us:
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| Jillian got a baby care center |
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| She is such a good little mommy |
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| opening her stocking |
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| Cheeeeeeessssseeee |
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| Brent got Ticket to Ride! He has been waiting for years for this game |
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| More stuff to take care of her babies |
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| Giving her new baby a check up |
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| Laying on the floor with George |
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| Brent building furniture |
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