Haddie’s Page
I
(Laura) have a friend from college who I keep in touch with
through email…Her name is Leith. She and her husband
Aaron, have a daughter named Haddie, who was born without
part of her brain (a condition called cerebellar
hypoplasia) and the rest of her brain is underdeveloped
(microcephaly). She is 8 years old but developmentally
about 2-4 months. As a result, she is legally deaf &
blind. She also suffers from a seizure disorder, inability
to walk or talk and is she is fed through a feeding tube
(g-tube). They have two other children named Holden and
Averi.
We receive emails periodically updating us on the condition
and prayer needs concerning Haddie. In the last few weeks
she has suffered from some complications with her feeding
tube. These emails brought me to my knees and they are some
of the most moving and impacting emails I have received
from Leith...(from any mother for that matter). Leith and
her family have displayed unwavering trust in the Lord, and
have served him in an unbelievable way through
Haddie’s condition.
Read how Haddie's story
began.
This page of our website is going to be devoted to updating you on Haddie’s situation in the hope that you will in turn intercede for this family by lifting them up in prayer.
It is true, we want to be a resource, but we also want to be considerate and aware of the deeper needs of moms... needs that go deeper than the resources we offer on this website. This is an example of that kind of need and one resource we can offer is prayer. Haddie’s has inspired us to be aware of mom’s dealing with deeper issues than “strong willed sons” and “drama queen daughters.” We are inspired to realize that there are more in-depth challenges in motherhood than either of us can relate to…so through her updates I hope to be humbled and gain new perspective on other unique and amazing examples of motherhood…I look forward to you joining us in this endeavor!
If you have a moment, please read the following…it is long, it has some difficult medical terminology, and at parts, it is graphic, but I think you will be moved by the aspect of her motherhood as she cares for her daughter…hopefully you will be moved to join us in praying for this family. Pray for any area of these emails that move you…for Haddie’s comfort, for Leith’s strength, for Haddie’s brother and sister, for the doctors, etc…even if it is only one area…come back to it in prayer...this is a way to step outside of ourselves and lift up others in this role of motherhood. Please also pray for Aaron, he is just as equally caring for this family and in ways that often get overlooked as much of the focus is on Leith as the mother.
After reading all that they are experiencing, I was not only moved to pray, but I was moved by what the Lord allows to come into our lives…He must know that Leith is incredibly strong, and as I read her emails, I was entirely humbled at what her crown will be like in Heaven…heavier than mine…that is for sure!
We will be posting all updates from Leith on this site as they come from her on Haddie’s condition…
To learn more about Leith's Personal Story click here.
In order to be truly “caught up” on the Haddie's condition, please begin at the bottom of this page and work up as the updates are posted by date in chronological order. The first ones (updates 1 – 5) were the most moving for me as a mother.
November 18, 2008
hads had a hard time breathing through the weekend...worse yesterday...took her to doc, he admitted her to hosp...she was pulling really hard...very lethargic & out of it...
about a half hour after we got there, they were trying to decide where to put her (icu or reg floor)...the icu nurse came to ask what are "intentions" are, "how far would we go to save her"??? when I stated that we will not resuscitate, use electricity, intubate...no compressions...etc...
SHE OPENED HER EYES, PERKED UP and became very ALERT...as if "well if they are not going to resuscitate me I'd better get it together!"
she was grinning, alert, talkative the rest of the day.
for the FIRST TIME EVER I left here there with the nurses and went to dinner with my family, met up with my girlfriends and CAME HOME TO sleep...big step for me.
I just called the hospital...she had a bit of a hard night...tugging really bad and had to be on 6 liters of o2, albuterol did nothing for20her this time...they were going to put her in ICU to do the hi-flow o2 but she chilled out a bit...she is sleeping now and doing better.
she also has some swelling, her little fingers look like sausages! doing lab work to see what that might be about...
we are trying to see if she can her her tonsils & adenoids out while we are there...
will keep you posted as I can...much love, leith
October 22, 2008
haddie came home tonight...bright eyed &
alert!
(although
she just had 5 seizures in 5 min)
she
weaned off of the hi-flow O2 easily & seems that the
steroids have helped...
we
have chosen NOT to do the tracheotomy...it is not a good
fit for
our
family.
we
will be scheduling surgery to remove haddies tonsils &
adenoids within the next few weeks...and will continue to
take her to the ICU as needed if she continues on with
these episodes. the reality is that this is part of her
decline & part of her journey.
T
H A N K Y O U
for
your prayers, they were felt & moved our hearts to
peacefully decide what to choose for our
daughter.
here
are a few words from aaron...
"Thank
you for your prayers. Here is a quick update.
We spoke with the ICU doctor last night and he was very
kind and gracious. In short, we believe that having
the tracheotomy surgery would prolong Hadley's life in ways
we do not desire. We believe that by doing nothing
other than treating her when she gets sick with antibiotics
and normal care that remains the more natural path to her
life ending at some point. Hadley is doing great
today and this decision isn't about saving her life today
or even next week. As the dr. described it and
affirmed it is a -fork in the road...I know this all sounds
fairly doom and gloom as if she is hanging on by a thread
today. That is not the case. It is more the
weight of making a big decision that will determine a more
likely near term outcome of her passing. Again it
could be 2 wks, 2 months, 2 years..nobody knows. The
dr did say that we can guarantee being back at the hospital
fairly frequently and that more than likely she will die
from a respirtory illness, which we had heard
before. "
Tuesday October 21, 2008
hadley is in the Peds ICU (memorial hosp, downtown)...she
was reallu struggling to breathe yesterday...admitted her
last night. she does not have pneumonia...docs think she
may just be at this "place"...talking about the possibility
of a tracheotomy.
please
pray for wisdom in this very brutal
decision...
I
don’t have time to write more now, will keep you
updated as I can.
leith
Thursday
Sept. 4, 2008
a couple things regarding miss haddie...
she
is now on oxygen each night
(fluctuating from 1/4 ltr to 1
ltr)
and
each morning we evaluate whether or not she eeds it
during the day as well.
we
are down to 2 caregivers at this point...one on saturdays
and one several times during the week...we just had a nurse
come out to assess haddies needs to see if we qualify for a
nurse to come in each day.
we
also, just found out today that haddies Growth Hormone is
severely deficient...normal is greater than 10...she is at
a whopping 1.6!
this
could be part of why she has gained so much weight so
rapidly
and
why her bones are so weak...
we
will learn to give her a shot each
evening
and
hope to see some improvement...and maybe some weight
loss!
our
backs would appreciate it!
for
those of you in town...we will be hosting a LUAU
for
haddies
10th birthday, sometime this
fall...
will
keep you posted on the date!
again,
thanks for journeying with us...these past few months have
been full as we deal with some of the realities of losing
our baby.
one
note to leave you with...I asked holden the other day if he
understands or "gets" the reality of haddies life and that
she could die soon...or maybe not...I honestly thought he
would fall in a pile, as he loves her so deeply...his
response...
"yeah,
I get it...but I mean, she will be in
HEAVEN!"
like
DUH, mom! right?
with
love,
the
mchughs
WEDNESDAY
august 6. 2008.
Haddie got to come home last night...she came home on
oxygen, at least for this week & then we will see if
she can pull off it during the day & hopefully just
need it at night...they did find a bit of a "strep" type
virus in her throat culture as it grew but nothing maj or
& the rocephin should knock it out...otherwise there
was really nothing that we found...so we still don’t
know exactly why she has struggled to breathe...maybe this
is part of the progression of her life? hope not...she has
still been sleeping a lot (which usually means she is not
feeling well)- otherwise she looks pretty alert when she is
awake.
we are all doing ok, for the most part. the reality of
having another piece of unwelcome equipment in our home
hits us all...I am in awe while the guy was here setting it
all up and telling me 100 things about it...aaron comes
home and shakes his head at it...holden asks in a panic
"will she have that on forever?"...and averi, also in a
panic, asks "why does chicky have that thing on her
face?"...it takes us each back a bit, back into the reality
that our daughter & sister is different, complex,
treading a fine line in life...sigh...ouch...initially the
respiratory therapists tells us that she needs to use the
machine at home with the 50 foot tubing that will run
throughout the house (sounds convenient & simple
right?) .thankfully the guy that came to set it all up told
us to use the portable as much as we want to make it
"easier" on all of us, not tripping on the tubing! after a
few attempts last night to get her hooked up with the
machine, a phone call to the company, a few tears of
exhaustion & frustration...we finally went to bed &
she slept pretty well...
thank you again for=2 0food, prayers, calls, emails, texts,
transferring of cars, silent presence, etc...we will
never be able to thank each of you enough...I am still
planning to head to San Fran early friday morning...pray
for aaron & kids. (:
with love~ leith (& the rest of the
mchughs)
TUESDAY
august 5. 2008.
no real news today...she was able to come off oxygen
yesterday & then went back on last night...looks like
we are at a place of having to put her on it at home,
hopefully only at night...she had a good day
yesterday...pretty good night, although she seemed
uncomfortable & grunted most of the night...she was
doing ok this morning when I left...miss aimee is with her
now, miss sarah will be there at noon...I am going to try
to get school supplies & groceries today & aaron is
hoping to get a full day in at work...
all things considered...we are all doing much better this
time around...kids are doing ok...just bummed...there has
been some healing the past 4 months so I think we went into
this one a bit more rested & had a bit more strength
& are all at a "better" place this time & in
addition to that she is not as sick as she was last
time...just need to figure out the breathing thing...thank
you and we love you.
MONDAY august
4. 2008.
Haddie has been fussing off and on since friday. we sedated
her several times over the weekend...seemed "ok" but not
herself...sunday am I went in there and she was struggling
to breathe..."tugging" I guess its called...we felt like
she needed O2 so I took her to the ER...she then was
transported by ambulance (since she needed O2) from
Memorial North to Memorial Central (since they have the
Peds Unit)...she stayed the night...had a hard time during
the night, struggling to breathe even with O2...the nurse
woke me up at 230a to tell me she was concerned that "my
daughter was not doing very well and was having a really
hard time breathing"...by about 330a she had settled,
Oxygen Sats went up...I told Hadley at that time that if
she was done fighting she could go...after crying myself to
sleep, I woke up to her pretty bright eyed and looking
ok...breathing ok with O2...she had a 2nd chest xray and so
far both were clear...she did have Rocephin(antibiotic)
yesterday via IV and now they just want to keep her, maybe
even 48 more hours, possibly go home on O2...they want to
RULE out/make sure that she does not have pneumonia...I am
supposed to leave for my college GIRLS WEEKEND in San
Fran this thursday night...so far we are holding up
ok...just sad this time around...sad for haddie, sad for us
that this is the reality of our lives...please pray for her
& for us.
with much gratitude & love~
leith
July
2008
Update
#2
I forgot to mention in the first update (seen below) that
she is also getting MUSIC therapy once a week & seems
to really love it...she is a Garth Brooks fan, who'd have
guessed that??
well, we have
been to a few appts this week & here is what we found
out:
we saw her ortho doc (mindy siegel) this
week and found that hadley fractured her tibia (below the
kneecap) sometime in the past 3 months or so...it has
healed itself but she is more fragile now...we are not sure
of how this happened...our best guess is that when she was
in the hospital in april-we had to hold her leg down while
they tried to start an IV...hate the fact that it could
have been me...but she is fragile...she has "severe
osetopenia"-low bone mass...she also has a 53 degree curve
in her spine, surgery is an option but it is a brutal
surgery that I am not sure she could make it through...we
will most likely just let her body do its thing and hope
that her organs adapt...her left hip is out of socket,
therefore it tends to lean inward...when diaper changing
becomes uncomfortable for her we will have to have surgery
on her hip...hopefully not for a few
years
we also visited
her Pediatric Endocrinologist (Dr. Nayak-in denver) to find
out why she has had significant weight gain...he is running
labs for different things and ill never remember all the
glands that we talked about but he is checking several
different things with pituitary, hypothalmus, thyroid...etc
to make sure they are functioning properly...in most areas
there should be a med that will help...if we don't find
much with labs we will take her in for a 4 hour study of
her growth hormone where she will have an IV and will
receive doses of "growth hormone" every 20 min or so, then
will draw labs to see how it is processing in the
body...something like that. don't quote me
(:
so there ya have
it....the scoop on haddie...thanks for loving us so
kindly.
~haddies mom
Update
#1
Haddie is doing GREAT! She just finished summer school
& seemed to enjoy it a lot! She is healthy, happy
& beautiful! She is really responding to our voices
& presence. I was just thinking the other day how I
used to pray that she would at least live long enough so
that averi would know her well enough to remember her...she
has...I am grateful. Averi is just now realizing what she
is missing...playing dolls with haddie, dressing up and
just hanging out and giggling. ): Haddie has 4 main
caregivers (miss sarah knighten, miss katie vaith,
miss aimee mcnab & her auntie Emily) for the
summer...someone is here most of the time. wow~ do I feel
spoiled? she is still getting pt once a week at home. we
are just trying to prevent further curves &
twists at this point...her left foot is really turning
inward, cant wear her little shoes anymore. crocs only! her
spine is getting pretty curvy too. we will be seeing an
endocrine doc this month, she has put on a lot of weight,
especially in her arms, yet her diet has not changed in
years... (24oz of pediasure each night)
well, I think that is about it for now. just wanted to keep
you all in the loop.
have a safe & fun summer.
love always,
the mchughs
4/9/08
Haddie is home!!
we
got home on saturday evening but my server was down...
she went to school today.
we
are still waiting to hear from doc about tubes in her
ears.
I
am still planning to travel... this week...aaron has taken
the week off as we are "recovering".
thank
you for EVERYTHING!
I
cant even begin to
express
the amount of thanks
from
our family.
please
keep praying for us.
we
love you.
the
mchugh family
4.3.08
hadley was admitted on tues for Pneumonia. it is in both
lungs. not mild, not the worst they'd ever seen. she has
had a fever off and on. is on a fair amount of oxygen-can't
go without it. she has not really been awake for more
than 10 min since monday night. she has a rash on her body,
not sure why yet. we are suctioning her constantly.
we will be there for a while, I think. she had another CT
Scan to show that she still has a ton of fluid in her
sinuses and ear...doc wanted to put tubes in today but she
is not stable enough for surgery. doc feels like she will
"pull out" of this...frankly, we are weary and concerned.
she is at Memorial Hospital Downtown (not North)
4th floor-Peds
look for the EAST elevators
rm 4310
visitors are welcome -if you are healthy- keep in mind
there are many sick sick kids up there-we do have a private
room...if the door is closed please come in quietly in case
we are resting. leave a note if we are sleeping.
please call or text my cell 719.271.7291 , I may or may not
be able to get back to you, I have 18 voice mails on it now
(:
I am unable to access email while I am there and am unable
to attend to my business...if you have an order here and
need it asap, call me on cell and we will figure it out.
food, treats, coffee, wine, magazines-all welcome (we have
no allergies) (:
prayer requests:
holden-not doing well, is afraid to see her bc he is
worried
averi- worried about her, big crocodile tears
aaron- tired, trying to work & tend to home & kids
me- tired....enough said
I am supposed to travel to atlanta for arbonne wed the 9th
aaron and I are supposed to head to napa april 17-21
feel free to forward this note- however I will not be able
to respond to all emails.
thank you for love, care & concern for our family. we
are grateful- I feel very loved with all the emails and
messages!
3/23/08
some
of you know that haddie's eardrum ruptured last sunday. we
did not even know she had an ear infection, so the rupture
was a surprise. she began screaming, crying early this
week...everyone said she should feel better bc the ear had
ruptured and the pressure is what usually hurts so bad- she
was not feeling better at all...so I took her in to the doc
again on wednesday...he ordered a CT Scan of her ear right
away (got in on thurs am) wondering if there was an
infection on the mastoid bone behind the ear...he called
later on thurs afternoon and said I needed to get her to
the hospital right away to be admitted...she had horrible
infections in her sinuses as well as fluid and
possible infection on the mastoid...the fear is that it
could spread to meningitis & hadley would most likely
not survive meningitis...aaron was literally in the air
flying home from a business trip so he had no idea...got
her to the hospital to do IV antibiotics right away...well~
she ha! d a miraculous healing there...she was happy,
smiling, talking and throwing her arms around, we kept
teasing her that she just wanted a girls night with mom at
the new hospital! turns out, we were discharged on
friday...she is doing great, we are pretty sure we are out
of the woods with the meningitis scare...she got to come
home on friday- we were so surprised and grateful!! she had
to go back in to the docs office for more rocephin (shots)
yesterday...she is still fussing from time to time but is
doing good. the ENT doc felt like she had an extreme ear
infection & sinus infection but was not concerned that
the infection was IN the bone-initially we thought she may
have to have surgery to drill into the bone to clean it out
(OUCH)...now we are looking at possible adenoidectomy,
tubes in ears and are talking about taking her tonsils
out...
i apologize for those of you that had no idea anything
was going on...it all happened so fast that I did not have
time to call everyone...
she is home on spring break this week so we hope to get her
healed up and ready to be back at school...
thank you to those who did know what was going on and
called, came to visit kept averi & holden, brought food
& treats!! thank you thank you!
as always, we love you all and are grateful for you and
your interest in our haddie!
happy easter!
2/28/08
Well hello to
all of my
friends & fans!
I know it has
taken me FOREVER to get a note out to you. I am just so
busy feeling good, laughing, smiling, going to school,
touching lives, kicking my legs and being sweet
& beautiful!
I have been feeling great...I have not caught any of the
"junk" that is going around and have just been in a great
mood. (: (mom is smiling).
I weigh 75 pounds now. My arms are fluffy but the rest of
me is in pretty good proportion, other than my head, of
course, it is still the size of a newborn baby. I am
9 years old and in the 3rd grade in case any of you have
forgotten (:
I go to school all day everyday (mom sighs) and I am in a
regular class but have miss aimee, my para ( aide), who
stays with me all day and gives me my meds, changes my
diaper and gives me lots of love!
the kids in my class are crazy about me, I mean, not to
sound, ya know self-centered or anything but it is the
truth. They fight over who gets to push me, they stress
when I am not at school and they love reading to me and
mostly the girls love holding my hands.
My g-tube site is looking good...my seizures have been
pretty good but some of the old kind are back (the ones
where I put my hands/fists up next to my ears and my head
goes forward- due to a sudden or loud noise) but mom talked
to the neurologist today and they are going to give me a
little bit more of my Valproic Acid (one of three of my
seizure meds). I still take meds for drooling but I
don’t seem to need it as often as I used to.
Mom still makes me take lots of supplements and
vitamins so I stay healthy!
My left foot is beginning to turn inwards, darn thing, I
can't keep it straight- I have to go to my ortho- doc soon
to have her look at it. I might get BOTOX!! ha!
My scoliosis is getting worse, but I don’t seem to
hurt from it. it does leave a few creases in my side
though, my waist just does not look like it used to when I
was young (:
I decided to put pictures of little chicks on this email
because you know my family calls me "chicky", I just got a
new necklace with a "chicky" on it!!
Everyone else in my family is doing really well too, of
course, when I am well EVERYONE is well.
OH here is something sweet to tell you...a little boy
named Maui at my school told miss aimee the other day
"you know miss aimee, I don’t think hadley likes
PINK, she is all dressed in pink clothes and blankets, but
I think she is really a TOM-BOY!"
isn't that sweet of him, being my voice?! FINALLY!!!!!
the hardest thing about the end of 2007 is that my best
friend Katie Mugele died...she was 15...we just did not
expect it...we are so happy that she gets to dance with
Jesus and that she does not have all these tubes stuck to
her, but we do miss her. and her family misses her. Mom put
her picture above my bed & her mommy gave me one of the
angels that was on her wall, so now it is on my "word wall"
(my big wall in my room that has lots of special words on
it, since I cannot talk, it talks for me (: ) & I
will never forget her!
Thank you for loving me, asking about me and remembering to
pray for me...
I love you all.
hadley rae/chicky/haddie/hads/haddie rae
11/05/07
We
just got word today that Haddie is turning nine on November
23! Here are some pictures. Thanks for all your prayers for
her.
08/24/07
WOW,
what a huge turn of events we have experienced...thank you
for asking so often "how is haddie?"
I realized that I left you all hanging after the hawaii
updates!
hadley not only recovered from her pneumonia but came back
HAPPY, ALERT, BUSY BRIGHT EYED
haddie!!!!!!!!!!!!!!!!!!!!!!!!!!
here are some things we are noticing:
- she has fussed at least 4 times in the past several weeks when she is cold!!
- she has been comforted twice at school in the last 2 weeks by averis touch (averis class is across the hall from haddies so she heard her crying and came and touched her, did not say a work, rubbed her head ) and hadley quieted!!!
- for a long time her head was stuck to the left (anyone familiar with Beyonce's song that has the words in it "to the left to the left") ? well that was our theme song for her this summer (thanks betsy!!) her head is no longer stuck LEFT!! she is watching the tv and watching it on the right side!
- she is doing this new things where she raises her eyebrows up when we talk to her and if we talk long enough she begins to "talk" back..."uh" "oooh" sweet sweet sounds!
thank you thank you for your love.
08/02/07
many of you have wondered how haddie is-thank you for asking...she is doing GREAT!!!
she is even really alert, happy, awake talkative and laughed just a little bit today (might have been a seizure, but we will take it :) )
we have been able to enjoy the last 10 days or so of our vacation...and are ready to head home on saturday...it has been a good length of time here...we have met some amazing lifelong friends who have really been generous to us and have cared for us while we are here...not to mention a new friend of ours, a special special man, david robinson (yes THE DAVID ROBINSON-San Antonio Spurs) he preached at a church we attended when we first got here and then we met him again at the resort where he and his family spend their summers...he took an interest in Haddie and his heart-filled questions sparked a very special conversation...we are grateful for him and the others that have taken an interest in our family.
we have rested some, played some, seen waterfalls, sea turtles, beautiful fish, seen tons of lava rock and even steam from volcanoes...we went on a submarine today and went down 100 feet!
aaron and i had a night out at the Marriott and was a much needed date with an amazing ocean-side dinner.
we have had wonderful help here...the nurses from the ER called to check in on haddie & sent an e-card!! wow!!
the doctors office also helped us get a med filled here (our doc could not refill since she is not licensed here-ugh-who would have thought of that)
aarons mom, nana, just left a few minutes ago...she was wonderful to have for the fun/laughs and as a cook, laundry lady, nanny & guest.
haddie is scheduled to have an EEG of her brain on august 30th...it is one of my least favorite tests (they mark on her little sensitive head with a colored pencil, then glue these electrodes to her head-many of you know she has a full head of hair and even tho we just cut off 9 in it is still FULL) she cries & hates it. and is supposed to be "sleep deprived" yeah right!
we still have no offers for help this fall, in case it is not clear what type of person we need here are the details of what we prefer:
female
16 yrs or older
no back injuries
not a nurse or c.n.a necessarily
anyone who has an interest in caring for haddie including her needs:gtube, seizures, lifting 65lbs of dead weight & can handle some messy situations >with her (dirty diapers, cleaning out her mouth, etc)
we can pay about $10/hr at first then you will go through The Resource Exchange to be paid by them, you will have to attend a class or two and fill out paperwork, get fingerprinted, etc.
that is all for now...thank you thank you thank you for your love...leith ( & fam)
7/24/07
i only have a few words today which i hesitate to write...
hadley is much better!!
sorry we did not keep you ini the loop yesterday, we had care for haddie all day so we PLAYED hard!!
we were at a beach in Mauna Kea-one of hte most beautiful ever...snorkled, played in the waves and had the first day of our vacation in paradise...then came home to give haddies meds( c.n.a's cannot do that) -she was in a good mood and still pretty sleepy-coughing only a little-so we went to our friends place in Waimea and fed their horses and saw the waterfall on their property and got to pet their very friendly goats!
on to day #2 of R&R...we were able to get another FULL day of care for haddie today so we are headed to a resort -Kukio- for the day...
there are no words to tell you all how grateful we are for all of your emails, keep em coming, altho i cannot respond , it does our hearts good to read them...much love, leith
7/22/07 PM #2
well, here i sit again next to haddie on the ER bed while they poke her >trying to find a good vein in her tiny little self...thankfully only 2 tries this time (thanks meredith-our new nurse friend here)...hadleys pneumonia has worsened a bit-
just did another chest xray to find that ...her oxygen saturation levels were a little low so she has been on O2 since we arrived...they also gave her a nebulizer treatment (forgot what it is called) and are giving her an antibiotic drip again, this time Zithromax...we will also go home with a script for that...
we felt like it was best to come back up her to get more xrays today after speaking with one of our docs from home...although aaron was already heading this direction in his gut. they have done some blood and urine tests, no results yet.
so...we will head back down the hill today and go back to our condo and HOPE again...if we can find it.
you all have for sure encouraged us in the midst of our questioning and struggle and deep hurt for all 3 of our "babies"...holden and averi have been so so precious in the midst of all of this...there is a DVD player in the van (which we do not have at home) so they are super about getting back into the car again...something to be thankful for i guess...
love again...leith
7/22/07 PM
hadley is still not doing well, she seemed better for a day -brighter- but slept the entire day yesterday & fussed off and on quite a bit again...still cacking and coughing up junk...i called the 'on call' doc this am who does not know her...we are going to get a dose of Zithromax in her and go from there...if she gets any worse we will take her to the ER have another chest xray and go from there...we may try nebulizers but this doc was cautious with that saying that some kids can have a negative response with it?!?
we again appreciate each of you..your words have been more than we can receive...
honest truth:
we do not feel strong, amazing, special at all right now. we are worn out emotionally, the kids are feeling it all too, holden is sad, averi woke up with a "tummy ache" last night...we want to enjoy this place but it feels very twisted...we can see it all, but cannot touch it...today, id rather be home...id rather be in familiar places, not spending so much money ($5 for a gallon of milk), close to docs, ER & drug stores...i am experiencing tons of headaches (even after a wonderful massage yesterday that aaron set up for me), thumb sprain and some other minor issues...all of that to say...we still need you.
love, leith for the family
7/22/07
just a quick note to let you all know that haddie sure seems to be feeling better...she is still sleeping a lot and coughing some...but her personality is showing again...YAY! We went to the doc yesterday, got a shot of rocephin and he said he does not think he will need to see her again!!
we are so grateful for each of your kind notes, thoughts, prayers, hugs,etc...we had a pretty good day today overall...i have done something (sprain maybe) to my thumb and would appreciate your intercession for that too, also that haddie would continue to feel better and better and that we can actually feel like this is a dose of R&R...
thank you thank you thank you....
ps-
on a totally different note, our caregiver Sarah just got married (:>) and may only be working one night a week for us from now on & Rebecca has a >>job offer that is wonderful and will be moving at the end of August so we will be looking for help again...please pass this on to anyone who may be interested... details below:
the pay is about $10/hr
our needs are M-F 730-830a
& M-F 6-8pm (ish)we are flexible
love, leith
7/19/07 PM
hadley has pneumonia(hylar-location)...it appears to be viral, which typically would be from aspirating something...but in case the "viral" turns "bacterial" she is getting IV antibitocs (rocephin) tonight to fight that-along with her ear which is still a bit red...she should be able to go home, then back up here tomorrow to see a pediatric doc for another dose (this time in her muscle) of rocephin...maybe again on monday...his hope is that she should be on her merry way at that point...if for some reason that is not the case, she will have to be flown to honolulu and be admitted to childrens hospital there for further treatment...
she has never had pneumonia before...so it is a bit surprising...some of her friends have had it, who are like her, and have recovered- so that is hopeful...however i cannot help but remember the doctors words when he told us at age 4mos about her brain "pneumonia and other respiratory illnesses could kill her"...
i will leave it there for you to intervene for us...we need rest...we need peace...holden and averi are very in tune with all of this too...they need peace and they need rest too, from this painful chaos they live in...
thankyou. leith
7/19/07
ALOHA dearest friends and family...
we are in Hawaii for 3 weeks at Waikoloa Beach!
The good news is that we are here...the not so good news is that Hadley is not well and we do not know what is the matter.
She began really fussing several weeks ago...then about 2 weeks ago we took her in and found an ear infection...phew!
we thought that would be it...the antibiotic did not work so we took her in again, ear was still bad, got a new drug....then flew to Hawaii a couple days later.
She is almost done with the 2nd anitbiotic and is still crying, moaning, fussing.
She is having a new seizure (we think) that makes her entire body be in a state of almost constant movement...little flailing of arms/legs, funny movements in her face, etc...
the neuro doc started her on a small dose of Clonazepam (similar to valium-milder) which she has already increased bc we did not see any change...we are sedating her daily, sometimes twice daily...
we may end up taking her in to see a doc here...tylenol does not seem to >>do anything for her...
i was hoping to send you all a fun note about HADDIE IN HAWAII but that is >>not the case...
we came here to rest (per advice from several dear friends)...we do have a CNA that comes in the mornings...and can occasionally stay longer...aarons mom will also be here in a few days for a week or so ...
please lift us up... love-the mchughs
4/23/07
well friends~
we just returned home from the ER-hadley broke her leg again and we are not sure how. she was fine last night when we put her to bed but as I changed her diaper this am she started to cry and pulled her leg in-sort of like she was protecting it...a familiar sight-from the 2 previous breaks.
the orthopedic doc who takes care of her was not on call but thankfully the pediatric doc knows us well and called her at home for us...she made the decision for the ER to splint her leg for tonight and that she will cast her first thing in the am so I can catch my flight to vegas for an annual arbonne conference...we are pretty sure she will not have to have the spica cast (the one that goes up to her armpits) that she had the first break-...this break is right above the knee so we are hopeful it will be only on her leg-that way she can be in her wheelchair and also still go to school.
she is resting well right now with sedation & pain meds.
please continue to lift her up and the rest of us, we are "sick of it"...she has to be sick of it too!
thank you for traveling this road with us, I know it is long and requires so many prayers from you-but thank you! we need you.
3/10/07
hello friends and family! HAPPY SATURDAY!
thank you for all of your kind notes asking how hadley is doing...she is doing really well...she has stopped crying and her tummy button has healed up and is working just fine!
she is still keeping her head to the left a bit and is still coughing and "chacking" a fair amount-not sure why-
overall she has become very vocal most of the day-it is really cute.
that is the update for now & again thank you so incredibly much!
warmly-
leith (aaron & gang)
2/25/07
hadley has an infection on her tummy this morning...please pray for her and for healing...please pray for us, feels like we just got pushed down again and had not even stood all the way up yet...
leith
2/22/07 Update #15
hadley had her surgery yesterday and it went really well...she woke up from anesthesia in a fairly good mood and only on tylenol...they were able to get a good hole in her tummy above the old site, so that was good news...she did end up having morphine last night-she had a hard time settling down later in the evening and night...anyways we just got home this afternoon from the hospital and sedated her right before we left there...she is resting well tonight...thank you AGAIN for your love for us...we are honored...please continue to lift up our family, although this was an easier procedure than all of the chaos last month, it still has taken a toll on us...holden (our kid who NEVER gets sick) has been home all week long with a fever and just not feeling well, averi has had some of it too-on top of that is still worried about going to bed at night or going to school without holden there or me being gone, etc (this is not like her at all)...aaron is trying to juggle work with all of this and in the mean-time I am still trying to run a business in the midst and not having much to give to anyone or anything...aaron and I were supposed to get away this weekend (had this planned for months) and cannot go now which is a disappointment...overall I think all 5 of us are ready to get our home & family back to normal and into a routine again, we have all just kind of been hangin' on the past 6 weeks-hardly having dinners together, mom and dad being tired, etc...
enough for now...we send our thanks with love!
2/21/07 Update #14
Haddie is having surgery this Wednesday, the 21st, to put the new gtube button in so she can get this nasal tube out...she hates it!
2/12/07 Update #13
again, thank you for your prayers & kindness...haddie has had 3 really good days in a row!
she is not crying, not gagging as much and is overall happy...however her head is really insisting on staying to the left (not sure why at this point) but she is kinda just "stuck left" right now...
her surgery has been pushed to Feb 21st, not sure of the time yet.
we are fairly frustrated with the length of time it is taking-I guess there is much to coordinate with the GI Lab, 2 docs have to be in on the surgery (not because it is so intense, it just requires 2 sets of hands), so getting their schedules to connect & on & on!
I will update you post surgery...thank you -
with much gratitude!
leith & family
2/1/07 Update #12
haddie made it through 2 days of school-yay-however she is still not well...not right...now we think she has developed a Urinary Tract Infection-I will take her in to the doc in the AM to get a shot of antibiotic...she has slept through night for 2 nights...she is real "gaggy" tonight and is doing an unusual thrusting of her tongue ever since yesterday...
1/31/07 Update #11
Well friends...I have hesitated to write hoping that Haddie would just get well...she has really not been well for the past 10 days ever since we got home from the hospital...she is just not herself...she has cried, fussed, whimpered for the last 10 days...we cannot figure out what is wrong...we have had to sedate her nearly everyday-sometimes twice a day to keep her comfortable...we have been to 2 different docs 3 times to make sure it is not an ear infection, sore throat, something with NJ tube, something related to surgery...no fever, her incision looks wonderful-tummy has healed very well...we have NO C
LUE what is up other than it seems like something hurts inside...I am collecting a stool sample (hopefully today) and will send that off to see if she has some kind of infection...she seems SAD at times, her cry is mixed with PAIN AND SADNESS it is heartbreaking to listen to...she did get her stitches out and will have her g-tube put in within the next 2 weeks...she has not been able to go to school hardly at all...for those of you who pray, please intervene for us...we are really worn out emotionally-and physically I am feeling it which is unusual for me (back/neck pain, tummy aches, headaches)...the kids are doing pretty well for the most part & aaron is "hanging in there" but is pretty spent as he tries to work and meet me at dr appts, worrying about me/haddie, etc-
one a side note I must brag-Friday I was an emotional wreck...he called me to say that if I could hang on for 30 min our friend (thank you beautiful one) would be there to relieve me and I was to go to our club at 430p for an 80 min massage and then to a hotel for the night-across the street from SHOPPING! he also went to the hotel-turned on the lights, heat, tv & left me chocolate and a note!! sooo...needless to say I AM MORE THAN GRATEFUL FOR MY HUSBAND-he is more than I ever hoped for!
please pray for the life in haddies eyes to return, she is just not herself at all...I really have to fight fear of losing her.
thank you all for your friendship, care & concern...
grateful for you again...leith (on behalf of my family)
1/21/07 Update #10
haddie is home and seems fairly comfortable for the first time in weeks!
it feels really good to be home - again, thank you thank you for all of your concern for our family...we are more than grateful for you! love love love
leith & fam
1.19.07 Update #9
Hadleys surgery went really well today...the doc was able to cut off some of the really raw tissue and sew the rest together...she did fine during the anesthesia and coming out of it as well...she is on pain meds tonight and as long as all goes well (considering the infection ratio is 50:50)... then she may be able to come home tomorrow...please pray for NO INFECTION!!
it has been a very hard week on her, she has not been pain free for quite a while...her wound got worse as the week continued...but now is much better...she will continue to be fed on the NJ tube until her wound heals...so we hope that in 2-4 weeks we will go back in for another surgery to put in a new gtube...again, thank you thank you thank you....
leith & family
1/17/07 Update #8
well, haddie is still in the hospital...I am home to take a shower and rest so I will be quick- short story is this:
• gtube site is still a mess, still trying to get it healed, if it does not close on its own by Friday they will suture it shut-then it will be a day or two more before she can go home
• she had an endoscopy today, her tummy internally looks great
• she was fairly dehydrated when we got to hosp on monday, but got iv fluids in her -she is better now
• the wound nurse is tending to her blister/wound on her toes
• she has been pretty uncomfortable with her tummy sore so they have tried to keep her sedated, but she had a strange episode yesterday where her o2 saturation went down so she has been off and on o2 since mon but is off of it today...she rested a lot today without any sedation
I am really tired today-I think aaron is going to sleep at the hosp with her tonight...I will go back tomorrow...thank you for all of the calls/email/love/meals/prayers/flowers/cards/visits!
much much love from all of us...the other 2 kids are doing ok-stayed home from school today but are overall doing well...
love, leith
1/13/07 pm Update #7
we are fairly discouraged tonight...Hadley’s leaking pretty badly from her old site...we made it at least 12 hours and she did get some nourishment today, that is good...we will take her in tomorrow morning to have a GJ (I think) tube put in that will be done by xray and will go directly into her jejunum -I think bypassing the stomach...should still have a small amount of leakage but not bad......her tummy was so so tender when we found the leakage...raw...several layers deep under her flesh...bloody, sore...
leith
1/15/07 Update #6
hadley is really hurting today...her procedure got postponed so I asked our pediatrician to help, he decided to admit her...so we are headed to the hospital to get iv fluids and to have this procedure done, she will be admitted tonight...not sure when we will be home or what email access we will have...
leith
1/12/07 Update #5
We thought that we were going to have to admit Haddie to the hospital today because she is really dehydrated, the tubing is sticking out of her hole again so everything is coming out...but the Nurse Practioner is coming here this afternoon so we don’t have to “go in” again...
she said this is a 1/million chance this would happen but the tube must have gotten as far as the tract near the stomach but did not get passed that into the stomach...she is coming over today to replace it...
haddie was in a lot of pain this morning, thrashing around while her meds & food were squirting out of the hole...it was raw again...she had not had any Tylenol or sedation meds so she FELT every bit of it...
-ugh. Lots of tears this morning.
Leith
1/11/07 Update #4
Thank you thank you thank you ...from the deepest places in our hearts for all of your kind kind words/thoughts/prayers...
haddie had a pretty good day, though most of it she was sedated...early this morning, she started to try to rub her face and was getting restless so we had to sedate her...we only had to get up a few times with her to change her dressings...we have had a pretty good day...
I think mostly we are just tired and spent...the hole in her tummy is definitely shrinking and I don’t think we will have any more worries about the tube poking out through it...(UGH, can you believe that happened last night??)...We fed her pretty lightly all day -enough to get meds in her, but she still drained out her dinner pretty good so we had to stop that feeding...thankfully we caught it before it caused any burning, etc-however it was all over her diaper, underpad, etc...We need you to keep praying, pray for rest for her again tonight...
she JUST started to wake up of course as I am headed to bed...she sounds a bit uncomfortable and I may need to sedate her again-keep praying...
oh, also...Our daughter Averi was freaking out tonight (she never does that) about going to bed...I am sure it is just residual from all of haddie’s stuff going on, but neither of us have much patience tonight...
we love you-I/we am in awe of how cared for we are by each of you, including those of you we have not seen in a long time and some of you we have never met-
We are grateful for you tonight-
Leith
1/10/07 Update #3
Well, literally as soon as I sent out the last update, I went to check the dressing on the "old" hole...it was sopping wet...why??
The old tube was sticking out of the hole in her stomach, so everything I fed her was pouring out along with stomach acid that had burned her skin so much that it was bleeding...
We are so tired of really trying to be upbeat and see the "bright side"--the painful realities are that, as much as we try and try to protect her and keep her from pain, we as humans can only do so much...I nervously poked the tubing back into the hole. An hour later after patching up the clean dressing, the same deal happened, this time Aaron was home so he helped to carefully pull the tubing in her nose out a bit so I could stick my finger inside the hole in her stomach and push the tubing back in-in such a way that it would have less of a chance of poking back out...
The hardest part is that this is not normal… our "parents" hearts and brains are not meant to stick our fingers inside our babies bodies through a gaping bloody hole.
Please pray for our mental and emotional strength as well as rest. We are going to have to check on her every couple hours through the night so she does not end up with her entire stomach burned & bloody...part of me wants to apologize for following up great news with the painful truth, but I trust that you will hear this from the cries of our hearts and continue to pray...the hole is already shrinking, please pray for it to close quickly enough that the tubing will not be able to poke through...we need to resume normal meds and feeding which we are apprehensive to do tonight for fear of leakage...enough for now...we are grateful for each of you.
Leith
1/10/07 Update #2
The procedure went beautifully!
The tube went right into her nose on the first try...she "gagged" a bit, cried a bit and it was all over...the removal of the other tube was nothing new (we do it at home when we change her button/tubing) but overall everything went great!
Prayers are needed now for the tubing to stay clear of her nostril so it does not breakdown the skin and that the hole on her tummy heals quickly and without infection...I have been using, Arbonne products (diaper rash cream, skin conditioning oil, rejuvenating cream) throughout this whole ordeal and I am convinced they are helping in the healing so I will continue those in hopes that it will heal must faster than expected...the sooner it closes, the sooner we have a new hole put in (that will require only an overnight stay in the hospital-we hope)...all of that to say we had a pretty good day and she is sleeping now (with a long yellow tube hanging out of her nose) and she is still the most beautiful angel!
She will go back to school on Thursday and I will need to go to school every afternoon to feed her (they are not allowed to do it at school-due to the fact that there is no FULL time nurse)...
That is the story for now...thank you thank you thank you again.
Leith
1/09/07 Update #1
As some of you know Haddie has had issues with her g-tube (feeding tube) for many months...it has been leaking, causing horrible sores/burns around the entry site, we are not sure what amount of food and medicine she gets b/c they come back up out of her hole in her tummy all over her clothes/ covers, wheelchair etc...today we will get a nasal tube put in in order to let the hole in her tummy close up...this may take up to a month, then she will have a surgery to open up a new hole.
Please pray for her today, this will be fairly uncomfortable...overall we believe it is a good and wise move but none of this is fun.
Our son, sweet Holden was in tears today, he worries about her.
Pray for all of us, we hate watching her go through this stuff...
Thank you. We love you.
Leith
Averi 5.5 years old and Holden 11years old.
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