Elise has had a rough couple of days. It started with Tuesday and
my last blog post. Then came Wednesday when she continued to have several brady
episodes and nine episodes on Wednesday night to be exact. On Wednesday, the
doctors decided to do a full work up on Elise for possible infection. As of
today (Thursday) labs are starting to come back saying NO infection. Whew! They
did go ahead and start her on antibiotics as a precautionary measure. My heart
broke when I learned they had to put her IV in her little head. Her arms and
legs were hard sticks and they feared she might pull it out, now that she is
bigger and moving around more. What a trooper! If all lab work comes back
negative, they will discontinue the antibiotics in 48 hours. As I've said
before, the professional team in the NICU is outstanding, and they never want
to miss anything that might be going on besides the obvious. We learned
today that Elise’s team of neonatologists were grilling Dr. Pyle, her neo on
record this week. Have you tried this?
What about this? Of course all the neonatologists round early in the
morning and discuss their babies together. Three of Elise’s neo’s stopped by
the bedside today to check on her and just simply say hello to us. Dr. Pyle
came by three different times to have conversations about Elise. We love the
teamwork, and we are in constant awe of the professionalism and love they show
us. Even one of Elise’s nurses and two of the neonatologists got in a fun
argument of claiming Elise: She’s my
baby! No, she will always be mine! Hearing this warmed our hearts.
The obvious problem for Elise is reflux right now. She was doing
great with bottles last week, but as with most preemies, reflux has entered her
little world and she doesn't like it one bit. Who would? Lately, when the
nurses suction her nose, they pull up breast milk. That is one leading sign
that the reflux is getting worse. Before today, the doctors wanted to try
putting her feeds on a continuous pump. Meaning, she gets 9 mLs every hour and
the pump never stops. They started the continuous pump yesterday, but since she
continued to brady throughout yesterday and last night, they decided that the
continuous feedings weren't doing the trick alone...Elise needed more
support.
Today, we met with Dr. Pyle and he thinks Elise needs to start on
the medicine Prilosec. The other thing he is considering is putting her feeding
tube farther down (into her small intestines) rather than in her stomach where
it is now. By placing the tube in her small intestines, reflux will definitely
minimize, and hopefully the medicine will also help.
We can certainly tell Elise is uncomfortable lately. She grimaces
many times and doesn't like to be moved around very much. We also know that the
bradys are not comfortable to go through and must tire her out quickly. It was
hard to be away from her yesterday when I kept calling the nurses, only to find
out more bradys were being written down on her report. We both couldn't wait to
see her today. Dad gave me the first holding round and I think that calmed both
Elise and me. She immediately started high satting and got very comfortable
while snuggling on my chest. Although I wanted to see the doctor right away,
Elise's snuggling made some of my worry fade away.
When Dr. Pyle came by again, he saw how comfortable Elise was on
my chest and told me that he thought Elise should try some non-nutrient sucking
today (exploring with breastfeeding). We scheduled the appointment with
lactation to come by and coach me through it. As soon as they arrived and I got
all ready, Elise brady'd and needed stimulation. Sometimes Elise can bring up
her heart rate and oxygen without 'help' from the nurse or one of us. If she
can't, we have to give her stimulation at times. Stimulation is usually rubbing
Elise's back and sides to try to get her to take deep breaths. We also
tap/pinch her feet until her blue color disappears and her rosy pink color
comes back. We also watch the monitors closely to make sure her numbers are
back where they need to be. This is definitely not something I've grown to
love. My heart breaks every time I have to do it. However, I have gotten better
with staying calm because I know that is what is best for Miss BLUEberry Muffin
(G and I agree her latest nickname is quite fitting).
If Elise’s several bradys weren’t enough worrisome news over the
last couple of days, the eye doctor came by the bedside for his bi-monthly
check-up today. In order to get prepared for the eye doctor, Elise got a series
of eye drops and then he puts a huge contraption on her face to force her eyes
open. After he leaves, she is fussy and her eyes are red and swollen for a few
hours. It was the last thing I wanted her to go through today, but nonetheless,
she was on the schedule to be seen.
For the last three appointments with the eye doctor, he saw no
signs of ROP (Retinopathy of Prematurity) in Elise’s eyes. We rejoiced with
this good news in earlier blogs. Ever since the first appointment, the eye
doctor did say there was always a slight chance signs for ROP could become
visible before Elise is considered a full-term baby. Today when he examined
her, he unfortunately saw a mild case of ROP. He said he is not envisioning
surgery now or in the near future, but he definitely wants to follow her case
more closely now. He now plans to see her weekly instead of every two weeks.
As you can presume, my mind has worried a lot lately. Elise was
having such strong/good days with finally getting off the CPAP, taking bottles,
and transitioning into her big girl bed. It was all looking up. Not to mention,
we are probably in our last month of the NICU. Not that things are looking down
now, but whenever there are bumps in the road, it makes you reflect on what is
going wrong (and many women like myself tend to WORRY when we don’t feel like
we can provide an immediate fix to the problems).
I just left my role as a worrying daughter. I worried that my mom
was getting the right treatment for her lung disease. I worried she was eating
enough living by herself. Was she really putting down that glass of chardonnay
and drinking the V8 juice I bought her from the store, or was she fibbing to
her daughter?? ha! I worried when she would sleep at night and when she would
feel the need to sleep all day long. Why was she not having any energy? Was she
getting sicker?
Now I have entered my role as a worrying mother....the role my
mother just left. She is now up in Heaven where she can look down upon her
children and granddaughter and know that things are going to be ok. Those of us
still on Earth don't get that privilege until we meet up with our loved ones in
Heaven. For now, we remain here on Earth to worry or anticipate the unknowns.
Of course, we like to say we cast our worries on God and let the big guy handle
them, but I'm as guilty as the next person...I still hold onto some of the
worry even after all the prayers and talks with God.
I understand worrying is part of life. Some people can handle it
better than others. I have been one of those people who tend to OVER worry
about things going on in my life. At
least I admit it, right?? Grant is always wonderful and correct to remind
me, "Honey, it hasn't even happened yet; let's not worry about the what
ifs right now." However, I think there is a difference between men and
women. Men have this beautiful trait of compartmentalizing worrisome issues in
their lives. Women throw everything into one big heap in their brains and take
all of it on at the same time. Ladies, how many times have you been asked by
someone, "What wrong?"...and you don't know where to begin???
Worrying doesn't always have a negative light. Many times women worry about positive things too. I found myself asking the question today, Will I ever stop
worrying about Elise?" When she gets into school? No. Grades. Right
teacher for her. Behavior in school. Making friends. When she goes off to
college? Heck no. Independence! When she marries? Well, probably not. Did she
find the right husband (hopefully just like her daddy). When she has her own children?
Oh no, because they will be my grandchildren. Sounds like the worrying
just changes during the different phases of our lives. It never really ends.
*************************
After spending a somewhat tense day in the NICU, G and I headed to
dinner. It seems as though God gives us a great ‘night cap’ when He knows we
need it. We went back for Elise’s 8:00 hands on time after dinner. It was the
first time all day that she had both eyes wide open! We were loving on her and
snapping pictures as usual, when Karrie, Elise’s favorite night nurse, asked us
if we’d like to try non-nutrient sucking. I first said no, remembering how it
went earlier today and not wanting to ‘push’ Elise. Then Grant reminded me that
her eyes were wide open and she seemed very happy. “Ok, let’s give it a shot,”
I thought.
Elise never ceases to amaze us! She latched on right away and
started sucking. It was exactly what this Momma needed…a little love from her
lady! She never brady’d and she kept her sats at high levels the entire time.
After exploring, Elise got held by her daddy as he rocked her fast asleep.
A mother's worry never ends. Or shall I say, "A mother's love never ends." We worry because we love so
very much. The love I have for Elise is indescribable… even if she is a
blueberry muffin at times.
Sweet Dreams,
G & J & E
Oh, Jessica - we never stop worrying when it comes to our children and especially our grandchildren! As a mommy, you have entered a most elite group - motherhood - the concern never goes away because of the simple fact that you love your beautiful baby girl Elise unconditionally. Even as we pray and pray and trust that the Lord knows best and has their best interests in His heart, we can't help having a mother's intense love in our hearts. It is the way we are wired. I know our blueberry muffin is going to be okay! She is a fighter and our little tiger - and we love her SO much!
ReplyDeleteThe worry never ends and you're right, it's because we love our babies so much!! I love the pictures at the end of your very long and trying day...she is so beautiful, she has the prettiest little fingers! Tulips and blueberry muffins...she's so many beautiful and sweet things, isn't she? I'll be lifting you all up today for extra prayers.
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