Two weeks have flown by, and miracles never cease. Our baby is getting
so big! She looks so different than she did in her newborn photos. Her
little features are becoming more prominent, and Everleigh is now 19 1/2
in. long and weighs 7lbs. 7oz. She is beginning to plump up and will
soon be out of newborn diapers and clothes. I guess future little
sisters will have lots of nice, never worn newborn outfits to wear.
Some lucky parent will also be blessed to inherit a couple boxes of
diapers if she continues to grow so quickly. It has also been fun to see her little personality develop. She is a sweet and spunky little baby! She definitely has an opinion about things and will be sure to let you know all about it. Just the other day, her Occupational Therapist came by to visit her. Everleigh was sleeping, so the therapist began trying a couple of tricks to gently wake her for her afternoon appointment. The therapist leaned over to whisper Evey's name and blow on her face, when Evey woke up with a start and shouted an angry coo into the therapist's face as if to say, "I'm still tired, come back later!" The therapist was so startled she jumped back and bumped her head on the monitor above Evey's bed. I tried not to laugh, but couldn't resist. Thankfully her therapist laughed too. Evey has so much spirit and determination!
Evey has progressed by leaps and bounds in the past two weeks. She is
truly a special little girl, and we are so blessed to have her in our
family. Thank you so much for your prayers and fasting, they have been
essential! Here is a summary of her progress thus far.
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| Baby's first bath |
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| Loving the scrubbing! |
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| The tail-end of a smile |
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| She really loves her Daddy! |
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| So tiny! |
Everleigh's Accomplishments:
Everleigh is officially off oxygen support! She can eat, sleep, and even
endure seizures without the need for extra oxygen. Hooray for meeting
one of her goals for going home! Thank you again for prayers and faith.
She is grateful to be attached to one less tube.
One of Evey's biggest challenges has been learning to eat on her own. Originally, we were informed that this could take her up a year and that she may need a surgically implanted tube in her abdomen to assist her. This was an absolutely terrifying idea to Nate and I. She has already been through so much, we didn't want her to have to endure anymore painful procedures. Plus, who doesn't want their child to taste birthday cake and Mac n'
cheese, or even try new foods and discover things they don't like? Nate
and I, as well as so many who care for Everleigh, fasted and prayed that
she would be able to learn to eat. The challenge for Evey is learning
to coordinate sucking, swallowing, and breathing in a pattern that
allows her to drink without choking and sending fluid into her lungs.
This is something that comes more naturally to other babies, but for
Evey it requires work and concentration. Her occupational therapist
believed in her and has been an Angel and an answer to prayers. Evey
has now been taking her meals by bottle for a week and has shown an
incredible eagerness to eat!! Her Occupational Therapist has shown us special techniques for
introducing the bottle to Evey that help her stay calm while she eats
and prevent choking. Evey still takes about half of her feelings through
a small feeding tube in her nose (it is a temporary tube that does not
bother her), and her goal is to take all of her food by bottle. She just
needs to keep practicing-she tires out toward the end of the feeding
and often doesn't finish her milk. We have every confidence she will get
the hang of it, and her feelings do seem to get a little easier for her
each time. What a Champ! Everleigh has shown us she is limitless and
can do anything she sets her mind to. That's our girl :D
Everleigh has also made strides in other parts of her development. Nate
and I have been watching her movements for signs of weakness or
struggle, in hopes of identifying which parts of her body would need the
most encouragement in developing strength and control. We noticed that she didn't seem to use her arms and legs nearly as much as other babies in the NICU, even compared to some of her micro-preemie neighbors. Nate and I decided to try playing little games with her that involved us stretching and flexing her arms and legs for her in hopes of encouraging her to develop some muscular strength. She loves these little games and the results have been miraculous. In just days she is already much stronger and we see so much more coordinated movement in her limbs than before. Evey has begun using her arms and legs to unswaddle
herself. She loves looking around to identify sounds and to look at
things around the room. In the process, she has started to learn how to
roll over. She can make it to her side, and then gets stuck. That is a
skill that does not usually present itself until 3-6 months in an
average baby! It requires coordination and strength. It also make diaper
changes interesting. Evey has also learned how to use her arms and legs
to kick with happiness, to grasp her blanket, do the "Mighty Cougars" cheer, and to play cute little games with Daddy. I tend to just put
her to sleep. We are so proud of her.
Cognitively, Everleigh is progressing beautifully. The goals for age 0-3 months are limited. By 3 months of
age, babies should be able to focus on objects and track objects with
their eyes, recognize their parents, respond to noises and look in their
direction, smile, and should make and maintain eye contact. Everleigh
has thus far accomplished all of these goals! Her goals for now are to
continue practicing these new skills. While she has done them all, her
medications make her drowsy and at times a bit spacey. She s not always
able to stay focused for long periods of time. As the doctors have
adjusted her medications and her alertness has increased, she has been
better able to work on her developmental milestones. After all, she still has plenty of time to practice. She will amaze us.
Everleigh's Challenges:
Evey's challenges the past two weeks have centered around her seizures
and tremors. Evey is neurologically sensitive to every form of stimulus.
She reacts to harsh lighting, loud and sharp noises, the taste of milk
and "sweeties" (sugar water squirts used to distract a fussy baby), and
anything that touches her. She loves music, singing, reading, and the
sound of her parents voices, but hates the sound of equipment alarms and
the cries of her neighbors. She scrunches her face and makes an angry
coo of sorts as if to say, "Can you be quiet? I'm trying to sleep!" She
loves to eat and is occasionally spoiled by her nurses with a few
squirts of sweeties on her pacifier when she isn't feeling well. She
enjoys being swaddled tightly and likes the feel of clothes, but does
not like to be rubbed or stroked. She does enjoy the gentle but firm
pressure from being held and snuggled. She also has to have a system of
curtains drawn tightly around her crib to keep the lighting dim, or she
will fuss and close her eyes. This sensitivity is manifested as
tremors-her body movements are jerky and uncontrolled. While her
sensitivity has decreased significantly over the past 2 weeks, her
tremors are still concerning to her doctors. On Wednesday, Evey
underwent an MRI to check on the status of her brain injury. The results
showed that her brain was unchanged from the way it appeared on her
previous MRI, performed the first week of her life. This was very
exciting news, as it meant no further damage was being done and the
cooling has effectively prevented any further injury. However, the
damage is so mild that it does not entirely explain why she is still so
tremulous. This, combined with the recurrence and increasing frequency
of her seizures, is forcing the doctors to look into other explanations
for her neurological issues. They have ordered blood work to search for
specific viruses and genetic disorders that could be causing the
problems. We will have the results next week and hope for good news. The
sooner we can identify the problem, the sooner we can treat it. The
tremors and seizures exhaust Evey's body and severely impact her ability
to complete her bottle feelings. They also limit her ability to
interact with Nate and I, and limit her Ability to have visitors in the
hospital. It has been truly painful to watch her suffer from these
issues. While her episodes are not painful, they do terrify her and the
only consolation she will accept is being snuggled and allowed to fall
asleep in our arms.
We have been asked many times by loving family and friends what we stand
in need of at this time. What we continue to need are prayers for our
family.Please pray for Evey, that her doctors will be able to control
her seizures and tremors, that she can enjoy deep and peaceful rest, and
that she can learn to take all of her feelings from a bottle. Pray that
Nate and I can continue to be strong for her and for each other. Pray
that Nate will continue to handle the pressures of school successfully
and do well in his classes. We have been told just today that Evey may
need to have a spinal tap, though it has been my sincere and ardent
prayer that she will be able to avoid having this procedure. However, if
the doctors cannot control her seizures, they will need to perform a
spinal tap to make sure they are not overlooking potential medical
issues. I have cried and pray constantly that she can avoid any further
invasive procedures. Please let this also be in your prayers. We live
you all and are so grateful for your love and support. We are dependent
upon it and could not make it through each day without you.
To end on a lighter note, I have compiled a list of Everleigh's many
nick names. When Evey was just a 12 week old fetus, her
ultrasound showed her jumping around and showing off for Mom and Dad. It
was quite the amazing sight! We coined her "Jumping Bean" at the time.
What resulted is a large string of fun nick names!
-Evey
-Evey-Bean
-Everbean (Grandma Collingwood's favorite)
-Bean Sprout
-Beanie Bops
-Beanie
-Beanie Baby
-Miss Beans (After the character in Rango who also has "special"
episodes. It's a defense mechanism, right? Lots of babies have it....)
-ForEverleigh (Grandma Knighton's favorite)
-Heavenly Everleigh or Heavenly (Papa Bullock's Favorite)
-Baby Child
-Peanut
-"The Kid" (thats the way her research doctor refers to her)
All so cute and so fitting of a precious little girl!
Thanks for reading up on our Adventures. We love you all and hope you are having a wonderful holiday season.
