Well we were hoping to make it a month without a trip to the
neurosurgeon, but today we found ourselves back in the office again. At our
last visit, her shunt was turned up again which slowed down the amount of fluid
coming off of her brain. We were happy to see that the swelling that she had
had around the shunt only came back a little and we thought we were ok.
Unfortunately, over the past 3 days I noticed her head circumference was
increasing, and her fontanelles (soft spots) were getting firmer. Yesterday the
fontanelles started bulging, and this morning her eyes began to “sunset” and
she was having trouble keeping them aligned (common for some babies, but not
something that she has had trouble with before). These are all signs that too
much pressure is building up in her brain. A quick phone call and we were back
in the office for another adjustment. It appears that she cannot tolerate the
slower setting, so for now we are sticking with the faster one. Although she
was not quite “herself” the last couple days, she handled the increased
pressure fairly well, even smiling for me in the waiting roomJ
Today was a huge reality check for me. Thanks to much
prayer, Meghan has done amazingly well these past 13 weeks of life! We have
settled her firmly into our family, and despite weekly therapy appointments
that “remind” you that everything is not 100% normal, I have come to a place
where it at least feels normal. Today was a “gut check”. Life with a shunt is
not normal, and sometimes, it is scary. I am so much more thankful today for
all the mundane moments we share at home, and even more thankful for the
limitless grace, strength and peace that is extended to me by my Savior. The
only way I can continue to walk forward without fear, is because I know He has
already been there, and is leading me on.
O
Lord, you have searched me and you know me.
You
know when I sit and when I rise;
you
perceive my thoughts from afar.
You
discern my going out and my lying down;
you
are familiar with all my ways.
Before
a word is on my tongue
you
know it completely, O Lord.
You
hem me in—behind and before;
you
have laid your hand upon me.
Sarah, Do we ever really know what tomorrow brings? God has given you the tools you need to keep Meghan safe. There are many reasons you are her Mommy. I have followed your journey from the beginning and I have prayed everyday for strength for you and Joe, knowledge and guidance for all the doctors, and continued love and support from friends and family. Meghan is so beautiful and so blessed to be a part of your family. I will keep you all in my thoughts and in my prayers, thank you for sharing her with all of US.
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