Wow. What an amazing 5 weeks it has been! Emily Quinn Griffin was born on March 24th,
2015 at 8:46am, weighing 8 lbs, 10 oz, 19.5 inches long, at exactly 37 weeks. Her head circumference was 47 cm – very big
for a newborn. The C-section went well
overall. It was a strange feeling but I actually enjoyed the whole experience,
as weird as that sounds. It was a little
difficult to get Emily out because the umbilical cord was wrapped around her
neck twice. Due to that, she didn’t cry
right away but as soon as they got the cord off and hyper-extended her neck,
she was crying and breathing on her own! I didn’t get to see or hear her but
Daddy got to follow her. Emily and Daddy got some good one-on-one bonding time.
They were able to collect enough cord
blood to do 3, maybe 4 transfusions!
She was stable and doing so well that they
decided to do the VP shunt surgery sooner than planned – 7 hours after she was
born! She had an ECHO because they
wanted to check on the fluid around her heart.
There was only a trivial amount and everything looked good so they
cleared her from cardiology. I didn’t think I would be able to meet my baby
girl before her surgery but the amazing surgery team bent some rules and
wheeled her up to my recovery room so I could meet her because in their words: “We
can’t send a baby into surgery without meeting her mama first!” It was only a couple minutes and went by so
quickly, leaving the whole experience feeling like a dream. The surgery was a success and Emily recovered
really well from it. She was off the
breathing tube sooner than expected, already showing everyone that she is a
rockstar!
A couple days after her surgery, I was
able to hold her, do kangaroo care and breastfeed her. It was simply amazing. After about 4 days,
Emily had jaundice and had to be under the bili lights, but that was expected being
born early. Her optic nerves looked good
and she responded to light. She will
still have an in-depth neuro-opthamology appointment in June. She passed her hearing test in her right ear
but failed in her left ear twice. We are
getting that rechecked in May. If that
is her only issue, I’m one happy mama! Other than that, she was just working on
feeding, growing and recovering from surgery.
After only 4 days, she was discharged from the NICU to the general care
nursery where we were able to room in with her and take care of her with the nurses’
help.
When Emily was 1 week old, she had
her first cord blood transfusion!! We
were so excited! Dr. Kurtzburg and Dr.
Thacker, who are performing the study, are awesome. We are so hopeful that the stem cells can
help repair any damage to her brain and give Emily the best chance
possible. It’s almost magical what they
can do. We asked how old the youngest
patient to receive a cord blood transfusion is and it is 1 week so Emily fits
in that record! The procedure was easy
and only lasted about 15 minutes. She
had to have Benadryl as a precaution that she could have an allergic reaction to
the preservative that cord blood is treated with so she slept the whole
time. The only downfall was that it took
4 tries to get her IV in because her tiny veins kept blowing. I was tough for her while it was happening
but I cried after the nurse finally got it in.
I feel so lucky that we were able to do this for her. How simple a procedure for something so big!
Emily had to have an NG tube placed because she got too
tired to finish all of her feeds. So we
settled into a routine of trying breastfeeding or bottle feeding with
breastmilk and finishing the rest through the tube. Soon, we didn’t even need the nurses anymore
because we learned how to run the feeding pump, do her head circumference,
weight and keep track of the amount she took by mouth. We were focused on
getting home but the neonatology team wanted Emily to return back to her birth
weight first. We thought that was ridiculous
because she had lost so much fluid from her head so it didn’t make sense to
expect her to have weight “gain” like a typical newborn. We explained this to them and all her other doctors
every morning during rounds. The
pediatric team, lactation consultant and all the nurses agreed with us and
thought we were ready to go home. They
also wanted us to add formula to her breastmilk to add calories, which I was
against because I’ve done research about other babies that started formula and
started spitting up more, defeating the whole purpose of adding it in the first
place. Every day they recommended it and
I told them I wanted to give it more time.
It was frustrating. Finally they
agreed to let us go as long as we both placed an NG tube in Emily twice, had training
with the pump we were going to take home (even though we already knew how to
run it) and promised to communicate her weight gain with them regularly. We both felt like she would do better with
eating once we were home because she could actually rest in between without nurses
bothering her every few hours to get vitals.
That was another frustrating part – every time we got Emily all settled
down and asleep, they would come in for vitals.
It got to the point that we had to shoo them away and tell them to come
back later. Despite this though, the
entire team that took care of Emily was amazing and I am so thankful for all of
them. We had many doctors and nurses
that we loved and who loved Emily!
Finally, after 2 weeks and 2 days, we were discharged on April 9th! When Emily reached her due date on April 14th,
she took off with eating. We needed the
NG tube less and less. She pulled out
the tube one day and we haven’t looked back since! Now she is an amazing eater and we still can’t
get over how often and how much she eats!
Soon she might be our little chubster! Every day with Emily has been a blessing and
we fall more and more in love with her.
She has quite the personality and doesn’t hesitate to express her
opinion! She can obviously see and hear
things, she tracks our faces, and is very alert and responsive, which is quite
a relief. I’ve spent too much time while
I was pregnant hoping and praying that she would have a good quality of life
and be able to see and hear the beauty in this world. It’s something I’ll never take for granted
again, even though I wish I could have the luxury of being naïve about it. I know every milestone and small moment will
be momentous for us. I am so proud of
how strong Emily is already. She is a
fighter.
We had a checkup almost 2 weeks ago with Emily’s neurosurgeon because she had
some swelling along her shunt tract near her incision. He said everything looks good and the shunt
is doing its job perfectly! We also had
a checkup with neonatology, who were happy about her weight gain and everything
else. She weighed 8 lbs, 5 oz, which is
less than her birth weight, so we were surprised they weren’t concerned, as
much grief they gave us in the hospital.
But we weren’t about to question them!
She’s been gaining ever since and currently weighs 9 lbs, 4 oz, as of
today at almost 5 weeks. Unfortunately
Emily currently has a fever, has been spitting up more than usual and is
fussier so we took her to the ER yesterday since she is in the window of high likelihood
of shunt infection. They did an
ultrasound of her head to make sure the ventricles weren’t bigger and did a
shunt series, which are X-rays of the shunt.
Everything looked good, thank goodness!
Her ventricles have decreased some, too!
They think she has a virus that just needs to run its course.
Not knowing what the future holds is still hard, but we are
enjoying each moment and feel blessed to be parents to our strong, amazing
hydro baby!
