Eighth
Month
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November
10 |
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Claire
and Dad spent most of the night together until Claire finally
fell asleep (with a little help from Advil) around 2:30am.
Guess mom will have to work that Advil in a bit earlier in
the evening.
With both hands in her mouth, or contentment with a bottle
in her mouth she seems like she is teething (I know I've said
that before!). Also, she isn't fussing during the day... she
is actually a lot of fun. Mom thinks Claire is looking like
she may be gaining a little weight too. (fingers crossed).
The barely has really loosened things up, mom may have to
add some rice to her diet again.
Mom woke Claire this morning for meds, breakfast, change of
clothes as she sweated during the night (mom had the heat
on in the house). Then after mom got some work in, they went
off to daycare and then mom to work. Claire was wide awake
in the morning, making faces at mom, like mom was a big nut...
and how can any child have a mom who acts like that... mom
was trying to get Claire to crack a smile.. but she wasn't
crackin'!
Claire was up all night, even with the advil laced pedialyte.
She was just so fussy, and mom was up with her all night.
Fortunately, tomorrow is a day off from work, so mom will
try to sneak in a nap.
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November
9 |
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Claire
slept all night. Mom and dad did too!
Claire went to church today, and mom noticed a bit of an apnea
spell. Claire was drinking from her bottle, and stopped and
just stared. Mom noticed she was getting a little 'dusky'
around her mouth, so she started gently moving her arms until
Claire 'came back' and started to 'pink up' again. It was
about 5-10 seconds, but seems like 10 minutes to mom.
She's noticed this before, and it is subtle enough that no
one else around can see it. But mom tends to stare at Claire
a lot and notice little changes in her appearance and personality,
and it is scary, but that's Claire... keeping mom on her toes!
Claire still sleeps with her oxygen blowing in her crib. That
gives mom some sanity during the night.
Claire fooled mom. She had her nice warm bath and wanted to
go to sleep, so mom put her to bed, and she was trying to
get both hands in her mouth. So mom picked her up again, fed
her more formula and she fell asleep again... for about 10
minutes. Then dad came in and got her.
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November
8 |
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Claire
was up all night and all morning. Mom fed and held Claire
until 5am. Claire wanted the bottle in her mouth the whole
night (mom is thinking teeth again) and fussed if mom took
it out (even when Claire appeared to be in a deep deep sleep).
At 5am, mom felt Claire's dad had enough sleep, so she woke
him and he took over. Mom was up again at 7am, fed Claire
her breakfast, dad gave her meds and mom bathed her and wrapped
her up all snuggly and Claire went to sleep, finally... and
slept most of the day.
Everyone was exhausted.
She had another nice warm bath in the evening, 2 oz of pedialyte
laced with infant's Advil, and about 3oz of barley/formula
and she fell asleep around 10:30pm... she had about 10oz barley/formula
all day.
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November
7 |
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Claire
was up until 1:30am with daddy. Guess she missed those nights
staying up with him. She was rudely awakened by her mom this
morning to go to daycare.
Her day was busy and she had a pretty good one. She came home,
had dinner, skipped her bath and went to sleep around 10pm,
only to wake up at 10:30pm. Dad took care of her until 12:30am.
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November
6 |
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Claire
slept through the night last night. She slept quietly too,
so mom had to get up and check on her. She woke up at 6am
and had 4 1/5 oz of barley/formula mix in about 45 minutes
and went with the other kids off to school.
She really seems to be back to her ol' sweet self. Mom thanks
the barely for that. Now it is time to focus on increasing
weight and strength... maybe getting a trainer for her workouts.
:o)
She went to bed after downing 7oz of barely/formula between
5pm and 10pm. The little tummy was so full. She was up again
at 10:30 and dad couldn't understand why she wouldn't drink.
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November
5 |
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Claire
was up with Dad last night until about 1am. He was surprised
to wake up and notice that she hadn't gotten up during the
night. And that means mom slept well!
She
stayed home with mom today, since she had a PT appt and Hospice.
The PT worked on getting her back to straighten when she is
laying down while keeping her head straight, so she made her
a pillow from a child-size sock. This will be for her head
to rest on and keep her chin forward resting close to her
chest.
Mom is trying to get all her appts on one day, for some sanity.
During her busy day, she kept drinking and drinking. Mom put
her down in the darkened livingroom and she finally took a
nap around 5pm. Mom woke her around 7pm for meds, dinner and
bath, and Claire zonked out again by 9pm. She was a tired
bear.
The barely cereal seems to really be good for her system.
She has had regular bms without any suppositories. It may
also be the reason she isn't so fussy. She loves the flavor,
it has a sweetness to it, yum. Mom skipped the spoon feeding
tonight, she needs to invest in a new baby spoon. Dad hid
all the old baby spoons... he's funny that way. :o)
Claire had nearly 12oz of barely/formula today and 2oz of
Pedialyte.
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November
4
34 weeks |
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Claire
was up at 4am for a small feeding... she only drank an oz
of formula, then wanted to go back to sleep. She felt warm
and mom took her temp. It was 100... after a 1/2 hour, mom
took it again and it was 100.5. When she was all done eating...
mom noticed Claire was sweating, so she turned on the fan
and loosened her covers and let her get some rest. Her temp
was very cool when she got up in the morning for her meds.
She had about a Tbsp and 1/2 of cereal tonight with the spoon.
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November
3 |
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Claire
was awake most of the night. Mom didn't get much sleep, but
did what she could. Still trying to get over her cold. Claire
went to daycare this morning and slept a lot over there...
of course.
Claire's friend found some Barely Cereal, and another friend
sent some in the mail from her T18 baby, another Claire who
passed away the week before Claire Baire was born. Claire
J is truly missed by all of us, tho we never met her.
Claire is going to try to eat from a spoon tonight. Should
be interesting. Rice and formula... loosely mixed. Then mom
will see how she likes the barely cereal in her bottle. Mom
has been giving her a suppository every other day, hopefully
the barely will eliminate the need for that.
Claire ate about 1 Tbsp of barely/rice/formula cereal by spoon.
Mom was so proud. The food went in, and the tongue pushed
out a little bit and the rest seemed to disappear. After a
few spoons, mom looked into the cup and most of it was gone.
She was tempted to go get more, but didn't want to ruin a
good thing and decided to clean up and get Claire her beloved
bottle.
Claire had a couple of oz of barely/formula mix and went to
sleep. Mom went to sleep too, around 8pm. Dad came and got
Claire around 10:30 and she had another couple of oz before
dozing off again.
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November
2 |
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Claire
had a snoozer of a day. The Advil may have taken a bit too
long to wear off. Claire enjoyed spending time with friends
in Georgia before heading back home in the evening.
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November
1 |
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Claire
watched college football most of the day with dad while mom
tried to get some sleep after Claire's restless night. Tonight,
Dad gave her some Advil diluted with Pedialyte. It went down
well and no gagging. She slept well, up from 3:30 to 4:30am
to drink 2oz of cereal/formula.
Claire's friends in Georgia bought her a Boppy pillow, she
now she has one of her very own, and will be returning the
'loaner' from the home society.
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October
31 |
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Claire
got decked out in her chili pepper costume and she was the
hit of the ball! She went to a Halloween block party and hung
out with Mom while dad and the kids went trick-or-treating
around the neighborhood with friends riding on a golf cart.
That's the way to go!
Claire's evening turned into a night of constant crying. Mom
is still thinking teeth, and even attempted to give her some
Advil, but Claire only gagged on it and gave mom a look like,
'what are you trying to do to me with that stuff!?'.
She had her weigh in today at the Pediatrician's office. She
is 7lbs and 3oz (up 4oz) and is wearing size 0-3 months. Mom
had to put away the preemie clothes a few months ago as Claire
outgrew them.
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October
29 |
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Claire
pulled an all-nighter - pretty much... she was up until 4:30am
with mom. Dad had her until 12:30am, while mom had a nice
nap since 8pm. It wouldn't be so bad if she was just content
to eat all night, or even play, but around 2:30am or so, she
gets a bug to start crying, and nothing seems to soothe her.
Finally, a bottle in her mouth will work, even if she doesn't
drink it, and so mom sleeps with bottle prop-ed up. Claire's
gums seem really swollen at night... perhaps she will get
ALL her teeth in at once, and the family will finally get
some sleep (hehehe).
Mom decided to send Claire to daycare with dad this morning,
and go into work for a bit. Claire has her first physical
therapist appointment today.
Mom still has her sore throat, and a stiff neck (gee I wonder
why) to go with it.
Pictures are coming soon. Mom has finally fixed her smart-card
reader problem.
Claire liked her physical therapy - somewhat - she at least
stayed awake for it. The picture above is her afterwards.
Mom decided to turn the heat on, it was a bit chilly in the
house last night. Claire had a few oz and went to sleep shortly
after, around 4:30pm, and mom did too, until about 5:30pm,
but Claire stayed asleep until 7:00pm, then had another couple
oz and back to sleep again.
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October
28
33 weeks |
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Claire
rested pretty well last night with a bottle in her mouth the
whole night. Mom was up every few hours changing out the formula,
as Claire wasn't really drinking from it, just wanted it there,
and mom was needing some rest, so she went along with it.
Claire was up at 7am to eat (for real) and get her meds and
play.
She spent some of her morning trying to make mom act silly,
as if Claire would laugh. Then she was working on tummy time,
but fussingly-so. She has come down with a cold, but seemed
to be handling it well during the morning. Mom woke up with
a sore throat this morning. That is 'so' not fun. Claire drank
about 12 oz today. Mom and Dad have been hunting around town
for some Barely baby cereal. No luck so far. The barley should
help with constipation, the rice cereal has been a bit 'binding'.
Even 'super' Wal-mart doesn't carry it. The search continues.
Until then, it's suppositories for Claire (yeah, yeah... too
much information!).
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October
27 |
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Claire
had a busy day. Mom monitoring her closely to see that she
was okay. She had an early morning bath, and then played a
bit while mom tried reaching the dr office to set up the bloodwork
and getting some work done.
Claire had an eye appt, and the dr said she wouldn't need
glasses. She appeared to be tracking well with her eyes and
tho her eyes appeared to 'jump' frequently (typically a sign
of bad eyesight) he felt it was more a symptom of the trisomy
than it was bad eyesight. She pretty much got a clean bill
of health from the eye dr and will go back in 6 months.
The bloodwork came back and she wasn't fighting any infection,
but her levels must be low because her ped said Claire needed
an increased dosage of the seizure meds. Mom started the new
dosage tonight. Claire had about 12oz, including some with
rice cereal.
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October
26 |
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Claire
had a nice long weekend, visiting with family and friends.
She had big fun, but it must have worn her out because around
7:00pm, she started having seizures again.
Hospice told mom that she could just call them and they would
'up' the seizure med dosage, so she called. They told her
to go ahead and give her the regular dosage now and they
would continue to try to reach the dr office. The nurse was
terrific!
Mom was expecting that she would have to play phone tag with
dr's after hours staff, but the nurse handled all of that,
she contacted the ped after-hours nurse, and eventually Claire's
ped, she contacted the neurologist office and tried to contact
Claire's hospice nurse (the one that visits her and calls
about her frequently). Unfortunately, her phone was hit by
the storm that came through that night and she was unreachable.
The
bottom line was that the ped said to bring Claire in for bloodwork
in the morning and they would check her med levels and test
for blood cell counts (to see if she was fighting any infections,
evidently that can bring on seizures too).
Claire's seizures quit about 30 minutes after she took her
seizure meds. Mom was happy, but still slept with one eye
open all night.
Seems ever day, Miss Claire becomes a bit more fragile and
a bit more strong at the same time.
On Saturday, Claire had over 16 oz. On Sunday, she had about
9 oz of Pedialyte and another 10 of cereal/formula and formula.
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October
24 |
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Claire
had clinic at the Children's Home Society. She did pretty
well, and mom was given some nice exercises to do with her,
and a 'boppy' pillow. A big pillow shaped like a horse-shoe.
Claire loves it and spent most of the day in it. It keeps
her aligned straight, and leaves her little options of moving
and sitting in odd 'poses'. Mom loves it, but knows that she
needs tummy time and play time where she can move around too.
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October
23 |
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She
woke up around 2:30am and had 3oz with rice cereal, then another
2 1/2 oz of formula before drifting back to sleep at 4:00am.
Mom wanted her to sleep in in the morning, since she needs
to be well rested for the day, and had such a good feeding
in the middle of the night, she probably needs the rest.
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October
22 |
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By
3:30am, after drinking about 7oz off and on since midnight,
mom decided she, mom, needed some rest (she had a 10am meeting
in the morning at work). As Claire lay in her arms, staring
around the room with a bottle in her mouth that she wasn't
drinking much of, mom woke up dad. He was smart and went to
bed at 10:30, so he had enough rest and was able to take over
for mom.
Claire decided to finally go to sleep this morning at 5:30am,
according to her daddy. The alarm clock goes off at 5:45am.
:o)
She hasn't been eating well at her daycare, so mom is going
to have to work with her this evening to get more food in
her. She evidently has her days and nights mixed up. Mom has
her thinking cap on again to work on that one! Mom teasingly
asked Claire's caregiver to 'cry' in her ear if she looked
tired and wanted to sleep... again, teasingly... mom is guessing
it wouldn't make much difference to Claire anyway... hehehe...
remember, Claire's hearing is in question.
She had a pretty good day at daycare, drinking 4oz, and then
home sleeping most of the day. Mom worked really hard to keep
her awake, and get her fed... but didn't want her too awake,
so she fed her and gave her another suppository and played
with her. Claire eventually had a big bowel movement, and
went to sleep around 8:30pm after drinking about 3oz.
She woke up again, didn't want to miss that daddy time, around
10:30pm and drank 1oz and went back to sleep.
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October
21
32 weeks |
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Claire's
dad watched her until 2:30am, and she finally dozed off and
he went to bed. Within about 10 minutes, she was up again,
and her mom came in with a new warm bottle. She put Claire's
socks on and soon Claire went to sleep until morning... around
3:30am.
Claire was woken early for her bath and bottle and to go to
daycare. Mom dropped all the kids off this morning, giving
dad a break, since he was just up at 2:30am, and she didn't
have the heart to wake him again at 6am. It was a bit of a
switch for mom, having the most sleep last night, and letting
Claire's dad sleep in.
Claire, with socks still on, didn't drink too much in the
morning... when mom took her to daycare, she told Claire's
caregiver about the socks. Mom said, 'take them off when she
needs to eat, and put them on when she needs to go back to
sleep'... they both laughed... mom seems to put a little too
much though into things where Claire is concerned.
Mom called the daycare and asked how Claire was doing, her
caregiver said she only had one oz in the 3 hours she'd been
there... mom was a little disappointed, and asked if she had
her socks on... and she did... when mom called back in an
hour, Claire had her socks off and drank another 4 oz. Too
funny... Claire you keep us in stitches!!
Claire got home and layed on her tummy for a little while.
She had a 7-month photo shoot today, but mom had to cancel.
With work and Claire's sister's drs appt, there was just too
much going on. We rescheduled for tomorrow.
Claire thought she might want to go to sleep after her bath
this evening, but quickly changed her mind. She really wanted
more attention from mom tonight...
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October
20 |
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Claire
woke up late this morning, and didn't drink too much going
off to daycare. At daycare, she only had 1 oz in the 3-4 hours
she was there. Mom wasn't too worried, she figured Claire
was still trying to digest all the food she had the day before.
Claire was sleepy much of the day, so when mom brought her
home from daycare, she took off her socks and put her in her
swing. Claire got her second wind and started eating - mom
thinks it is all about the socks. She went to bed around 9pm
and so did mom, but Claire got up at 11:30pm to hang out with
dad for a while.
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October
19 |
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Claire
had banner day... yes she had a B A N N E R
day!!
Claire drank 20 oz of formula today, and she had another 2
oz of cereal/formula mix. Mom is so proud of her, but must
admit that she was eating around the clock... Mom is thinking
that maybe the rice is expanding her tummy, but the formula
never really filled it up (mom can dream a bit)... or that
she just kept drinking, thinking that the next bottle would
have some rice cereal in it... that's Claire, always thinking
about the next bottle.
It was really cool, watching her drink and drink, and keeping
track watching the little tick marks ( like |||| )
increase in numbers... mom is so proud of Claire... she is
telling everyone about her banner day!
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October
18 |
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Claire
finally went to sleep around 1:30am. In the morning, dad woke
up and got her out of bed. He went to change her diaper and
noticed a blister on her back. It appeared to be where she
had some lotion put on her from the hearing test, as it was
on the nape of her neck and below. It was probably on her
hair too. Mom gave her a nice bath in the morning, and put
some ointment on it right after her bath. The nurse said to
leave it open, so Claire drank 4 oz of formula and fell asleep
on her tummy, and her back could get fresh air.
Claire had never had a reaction before and had a few hearing
tests done, but this time they must have used a different
lotion to attach the electrodes, or to clean up the paste
used on them. Either way, mom and dad were caught way off
guard, but know it will just be a matter of time until her
shoulder is cleared up.
With all the constipation problems yesterday, mom held off
on the bath, but probably shouldn't have. The bottom line,
never believe any lotion on your child is safe. She had never
shown any sensitivity to anything like this before... but
that doesn't mean she isn't allergic.
After her nap, she woke up and guzzled another 4 oz later
in the day.
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October
17 |
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At
12:30am, Dad decided mom had enough sleep, after all, she'd
been sleeping since 9pm, so they tagged up and mom took over.
Claire was fussing by then, and mom gave her some decongestant,
fed her and rocked her. Finally mom dozed in and out, but Claire
stayed awake in her arms, both laying on the bed, until finally
around 4am, Mom decided Claire might actually be asleep (and
not just faking - like waking up once mom puts her down).
Mom crawled back into bed, only to wake up at 6am so Claire
could get up for her sleep deprivation (ok, stop laughing) for
her hearing test at 9am. Dad was elected to get up, since he
was looking at about 6 hours of sleep in a row, and his job
was to keep her awake until 7:30am, so mom could get a little
more of a nap before taking Claire in for her appointment.
The test went pretty well -- left ear this time. Claire cannot
hear through her ear canal, but the bone test looked promising,
so we are going to anxiously await the results from the audiologist,
a very neat woman by the way.
By noon, Claire hadn't had much to drink, since she was sleeping
most of the morning, but mom will be focusing on that (and her
work) for the rest of the afternoon. Kids are out of school
today, but being very quiet for mom to work.
She had 2 oz of formula and 3oz of cereal/formula mix. By 3:30
she had another 3oz of mix.
Claire was awake pretty much the whole afternoon crying. She
appeared constipated, so mom called the dr office. After a couple
hourse, she didn't get a call-back, so she called and finally
was able to speak to the nurse who recommended glycerin suppositories,
and mentioned using only half one.
That seemed to work... Claire was busy all night filling diapers
and mom was busy changing them. The nurse also mentioned taking
Claire off the cereal until she is 'flowing' a little better
(okay, sometimes there's a little too much info here :o). |
October
16 |
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Claire
had a wonderful morning, after only getting up once to eat
(3 oz in 30 minutes at 3am) she dozed back nicely and mom
crawled back into bed.
Her day at daycare was nice... she was alert all day and just
wanted to play.
Claire
must love baseball, cause she didn't go to sleep at all during
the game. Dad put her in her swing and she just hung out with
him all night trying to pull those Red Sox through... but
no luck.
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October
15 |
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Claire
had a wonderful morning, and an even better day at daycare.
She played all day, stayed awake, but not fussy at all, just
wanted to be part of the gang... She had a nice bath when
she got home and went to sleep at 9pm as mom held her while
she ate and watched tv.
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October
14
31 weeks |
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Claire
woke up at 4:30am and drank 3 1/2oz before going back to sleep
until 7:30am, when dad took her to daycare.
Mom picked her up for a morning ped cardiologist appt, where
she weighed in at 7lbs 3oz (Claire likes their scales better
than the ped's office). The dr said she still has her hole (teasingly)
and to keep her on her meds... while he doesn't think she needs
them (life or death), he thinks they will help her, so he wants
to keep her on them, and at the same dosage, since her weight
hasn't fluctuated much. Also, when she is much bigger, and the
hole will seem much smaller, she will be off her heart meds.
The hole could be completely gone by age of 6, but no reason
why it would grow. Mom asked why the last tests showed that
it grew from 3mm to 3.5mm, and the dr said that it likely didn't
grow, but rather it was just the measurements being 'that much
off'. He originally put her on the heart meds, not because the
hole grew, but because he thought that it did, from hearing
it, the murmur was much louder. And after the results showed
it didn't (really) grow, well, he decided to keep her on the
meds. One med keeps her lungs from getting fluids in them, too
much blood flow from the hole into the wrong chamber. The other
med keeps her heart from being fatigued. Mom knows he knows
best, he is also a very dear friend of the family and the best
in the business!
Claire went back to daycare, and mom back to work. |
October
13 |
|
Claire
was up again at 2am, sweating, mom fed her another oz and turned
on her fan, before she dozed off again until morning. Mom woke
Claire up at 9am for her breakfast, and she had a bath and drank
3oz in about 15 minutes. Then she rested for a bit while mom
got some work done. Then off to daycare so mom could go into
work for a while. Claire probably averaged 10-12oz/day of rice
cereal and formula mix all weekend.
She had a nice warm bath with Lavendar baby soap and off to
bed for a little while. Dad was up with her later, until around
11:30, when she went back to sleep. |
October
12 |
|
Claire
had a nice morning, tho saying goodbye to family and friends
she did rest a bit before church. In church, she pretty much
slept or looked like she was 'almost' asleep... it was very
chilly there, but mom dressed her warmly... and good thing too,
since we went to brunch afterwards and it was REALLY cold there,
mom didn't have a blanket, but Claire was comfortably dressed
and slept for most of the meal.
In the afternoon, she and mom took a nice long nap and got to
bed relatively early in the evening too. Claire went to bed
at 10pm, and then up again around midnight - dad fed her 3oz. |
October
11
7 months old!! |
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Claire
had a pretty fun day. It was rainy, but in the evening it didn't
matter much, she enjoyed having lots of family and friends over
for a big party. Everyone wanted to hold her and aside from
a little cat-nap in the evening, she was very alert and playful. |
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