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Today's Picture. 10-23
UPDATE: 12-1
Lyndsay has been home nearly a month. She is up
to 6lbs. now. She has had to be on oxygen since
this past weekend due to a respiratory infection.
This infection has slowed down working on her feeds
as her stamina to take the bottle has been less.
Please pray for her healing in recovering from
this infection and to get off oxygen soon. Also
pray for continued improvement in her feedings as
our alternative is to proceed with a gastrostomy
tube into her stomach if she's unable to take her
full feeds by mouth. God has worked many miracles
in her life and we pray for her continued well being
and improvement in these areas. The physical
therapist is amazed by her good muscle tone and
says she's almost able to roll over and is lifting
her head to change positions when on her stomach.
Love in Christ,
Lynne
UPDATE: 11-17
Lyndsay went to her cardiologist today. He could
not hear her heart murmur and the echocardiogram
showed that the leaks around the patch sewn over
the hole between her ventricles had become small
and were before moderate. There was no significant
pressure differences between the ventricles as before
and the tricuspid valve had less backflow of blood
into the atrium as seen before. God's still performing
miracles in Lyndsay's life and healing her heart.
The cardiologist said we could increase her fluids
to normal amounts as they have been restricted before
now and this should help her to grow more. Continue
to pray for Lyndsay to take more from her bottle.
She took 20cc's from Buster two different feeds in
the last two days. Praise God! We covet your
continued prayers. Love in Christ,
Lynne
UPDATE: 11-14
Lyndsay is now up to 5lbs. 12ozs. as of yesterday.
She is doing great at home and loving the security
of her family and home surroundings. She has not
had any breathing problems since being at home and
her breathing is unlabored. We've only had to use
oxygen briefly twice when she got mad from a soiled
diaper which she does not like at all. We continue
to work with her in regards to her feeds. She is
taking between 10-18cc's by mouth each feed and needs
to work up to 50cc's each feed in order to have the
NG tube removed. Please pray for her continued
improvement in taking her bottle and growth. She
has a cardiology appointment on Friday to further
evaluate her heart and the leak around the patch
which was placed to cover the VSD (ventricular
septal defect). The pediatrician last week said
she could barely hear her heart murmur and we
continue to pray for total healing of her heart
so she won't have to continue on Lasix (a diuretic)
and potassium.
Her dedication was Sunday at church and Buster and
I both gave testimony to what God has done through
Lyndsay. God gave me the scripture Psalm 105:1-8
as I read my Bible the night she came home 11-3-00.
What a truth this scripture holds in Lyndsay's life!
Love in Christ,
Lynne
UPDATE: 11-3
Lyndsay is home! Praise the Lord for his rich
blessings and his faithfulness through answered
prayer. It's been a busy day with home health,
equipment company, and early intervention program
coordinators coming to see Lyndsay and get her
care set-up. She's been sleeping alot today and
seems to enjoy her new environment away from the
hospital and home with her family. Jordan(our 3
1/2 year old) has been by Lyndsay's side most of
the day just loving on her and wanting to show
her toys. Please pray for Lyndsay's continued
strength in taking her bottle feeds and growth.
Pray that her lungs will stay clear of fluid.
Her baby dedication is planned for Nov.12th at
church--what a glorious day that will be! We
pray for strength in dealing with a child with
special needs and to enjoy each day that God
gives us with her a day at a time.
Love in Christ,
UPDATE: 11-1
Lyndsay is scheduled at this point to come home
on Friday. Buster and I will room-in Thursday
night with her at the hospital. We will provide
all her care to include feeds, meds, etc. from
8p.m. to 8a.m. Buster learned how to put the NG
tube in today and did well. He also took a CPR
class and discharge class. Tomorrow we take the
car seat in to be checked out and learn how to
operate the home equipment. We will have oxygen
available at home if she needs it, an oxygen
saturation monitor, and kangaroo pump to deliver
her feeds through her NG tube that she doesn't
take by the bottle. Her hearing test revealed
that she can hear but there are some deficits
and it will be rechecked in 3 mo. Pray for her
lungs to stay clear of fluid, more stamina with
her feeds with the bottle so we can get rid of
the NG tube, full restoration of her hearing,
and healing of her heart where there is a leak
around the patch. Thank you for your continued
prayers, Emails, and concerns. God continues to
work miracles as is evidenced by Lyndsay coming
this far and what a blessing she has been already
in the lives of so many. Last night and tonight
I bathed her in the basin and she loved sitting
her little bottom in the water and having the warm
water poured on her--it was really cute! I'm sure
it will be an adjustment for her at home with Drew
and Jordan around to entertain her.
Love in Christ,
Lynne
UPDATE: 10-28
Lyndsay is scheduled to come home mid to late
next week. She is still trying to progress
with her bottle feeds. We will bring her home
with a NG(nasogastric) tube in order to give
her nutrition directly as she has not yet worked
up to taking the full amount needed to keep her
growing. I wanted to give her more time to work
on taking the bottle and not rush into a gastrostomy
tube to help feed her. Plus I was not at peace
about another surgery for her at this time and
pray that she will able to get the suck/swallow
coordination and stamina worked out on her own
with time. She has been taking 7 to 15 cc's for
me at any given feed and needs to work up to 50
cc's per feed that's about an ounce and a half.
Please pray for Lyndsay in regards to her being
able to feed solely with the bottle and for our
coming home without any setbacks. Also pray for
her hearing as she failed the initial hearing
screen and will be formerly tested next week by
the audiologist with a more sensitive hearing test.
God has brought her this far and we just praise Him
for his faithfulness as prays are continually raised
up for her.
Love in Christ,
Lynne
UPDATE: 10-22
Lyndsay had her video swallow test on Friday
and can suck/swallow and did not aspirate.
Her suck/swallow is not real strong yet but
with time we pray it will improve. I fed
her a bottle starting one feed daily Friday
night. She took 7 cc's and again last night
she took 7cc's. It took 30 minutes to do
the 7 cc's. I'll try again tonight and maybe
tomorrow they will up her to more than one
feed attempt daily. Drew got to help me give
her a bath this afternoon and held her for
awhile. This really thrilled him especially
since he was just with me and could spend more
time at Lyndsay's bedside instead of having
to trade off with Jordan sharing time. Only
2 people can be at Lyndsay's bedside at a
time(that's the rules). Please pray for
Lyndsay to strengthen her suck/swallow
abilities and coordination so we can get
her to full feeds and home soon. Lyndsay
is continuing to amaze the doctors and
nurse practitioners at the hospital as
no other Trisomy 18 baby has come this
far in their NICU and as one of the nurse
practitioners said they're "on a learning
curve." We just praise God and give Him
the glory for what has been accomplished
in Lyndsay's life at 3 months of age and
how she's been able to touch so many lives
through her struggles.
Love in Christ,
Lynne
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