As I mentioned in our last post, Ellie has been doing
great. At her 2 week appointment she’d
surpassed her birth weight and was doing peachy keen. The next day (Thursday, 9/18), Ellie showed her
first signs of distress – at 15 days old.
I was feeding her and watching her brothers run around the living room
like the crazy monsters they are. When
she finished nursing, I brought her up to my face to kiss her head before
readjusting her to switch sides. When I
kissed her forehead, she was covered in sweat.
My heart broke a little because I knew that this was one of the first
signs we are supposed to be on the lookout for (sweating across her brow while
she’s eating). I wiped it away and sucked
up my feelings and switched sides for her.
Again, she was sweating through the rest of the feeding. Dang it!
She did the same at the following feeding (which I was finishing up
right before B came home from work).
He walked in and sat on the loveseat across from me. I felt my voice start to crack as I told him
that she showed signs of distress. He
let me cry… but assured me that this was part of what we were expecting and we
have a team of doctors that were there to help us. For whatever reason, I was okay when I sat
alone with Ellie, internalizing the heartbreak of watching her struggle, but as
soon as I had to admit that to someone else… even my husband, I lost it. It was like having that secret between Ellie
and I (just for a few hours) was bearable, but letting someone else in on that
vulnerability was painful.
Don’t get me wrong… I’m so thankful that our first 2 weeks
were symptom-free (outward symptoms, at least).
That is fantastic. I just wish we
had more than two weeks of “she’s doing GREAT”.
She’s a tough little booger and is still doing okay, but we’ve begun to
feel those bumps in the road. She didn’t
bead up in a full-on sweat at her night feedings, but she got clammy. She’s done one or the other for all of her
feedings since. I called the
cardiologist on Friday morning and she said that she’d note the symptoms in
Ellie’s chart, but we could still keep our appointment on the 29th
to evaluate Ellie again and see if we needed to start medication yet.
On Saturday, I went to the Springfield Extravaganza with my
sisters and a bunch of our kiddos. Aside
from the meltdowns my boys had, we had a fabulous time and got in plenty of
walking and treasure hunting.
Afterwards, we met at my parent’s house to celebrate my oldest nephew’s
birthday. I was standing around the
counter with my sisters and Ellie was lying out on the counter so we could all
check her out. This is the first time
that I noticed that she had started to retract while breathing. This means that when she takes a breath, her
ribs suck in instead of expanding outward.
Her upper abdomen is also getting sucked up a bit under her diaphragm. Since Saturday, this has become the norm for
Ellie… another sign of respiratory distress.
Again, I felt like we’ve been a little defeated, but also knew this was
part of what we should expect with the heart defect she has. I always know that things could be worse…
that’s for sure… but dang it, they could be better too. I hate that I feel that way, but if I’m being
honest… that’s the ugly truth.
On Sunday, we had a fabulous sermon at church and I took the
time to surrender our marriage, our finances, our future, my fear, and of course, our
children and health to God. I talked
with some close friends afterwards about being bummed out – and talking about
it again made things a little more bearable.
I’m hoping that the more I share, the lighter the load feels. It feels so backwards to me, but it seems to
be working so far. Thank you for
following along – and thank you all because somehow, you are all helping us
unload this weight of worry and fear and doubt.
We love you for that! On Sunday
night we had some fabulous company that came over and brought some dinner for
us… and because they have 3 kiddos the same ages as ours, they made us feel a little
more normal in the midst of chaos. Love!
I’ll probably update you all later this week because Ellie
has her first assessment for therapy on Thursday. She also has her first physical therapy and
occupational therapy appointments. They’re
coming to our house for these, and I’m super excited to learn how to help
Ellie. Did I mention yet that I have a
massage therapist who is going to teach me how to do infant massage on
Ellie? I can’t wait to do this. I think Ellie bug will love it! Until next time…
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