Two months have passed since Grace’s entrance into the world. Two entire months. Eight weeks, 56 days. That seems incredible to me. Of course time always flies, especially when infants are involved, but it literally feels like years ago that B and I were sitting in my hospital room joking that my cervix might never dilate, still blissfully unaware that there was anything wrong with our precious girl, enjoying what felt like a peaceful labor experience this time around.
And today I woke up feeling that peacefulness again.
Grace had two appointments yesterday. The first one was with Infectious Disease at Children’s Hospital. There, we met with my favorite one of her doctors, Dr. Michaels, who is so very pleased with how Grace is doing. She is not rejecting the antivirals and so far they have had no affect whatsoever on her white blood cells. She is still super tiny (7 lbs, and below the 2nd percentile!), and her head circumference isn’t catching up to what it should be as fast as they would like, but generally that is what they expect to see in a baby with congenital CMV. She isn’t presenting with seizures yet, does not show any signs of the also CMV-common severe reflux and aspiration, and she is awake and moving just as she should be. They upped her antiviral dosage, oohed and ahhed over her adorable giraffe blanket and pacifier (it is the Giraffe Pod after all), and sent us on our merry way.
(Lilly isn’t the only helpful girlie in our house! Grace is pretty helpful too… just hangs out here like this, listening to music on my iPhone, sleeping away…)
Yesterday evening, we also had a home visit from three early intervention specialists for Gracie’s formal evaluation- one of which specializes in infant vision (this woman seemed fabulous btw, she really eased my mind). For two entire hours, they talked with me, played with Grace, and were an excellent audience for my show-off two year old. My suspicions about Grace’s eyes were confirmed; there does seem to be a delay in her vision and also a heavy favoring of her right side. Her preference is to turn her head and look only to her right. She can turn and look the other way, she is just choosing not to. (The word Torticollis was thrown around if there are any health pros out there). But this can weaken her left eye and left field of vision. Thankfully, I can personally help Grace correct this problem just by doing the things I basically already do with her. The only real specific changes B and I need to make sure we are implementing are propping Grace in certain ways to make sure she is sleeping and resting with her head turned to the non-preferred side and actively encouraging “looking” in the other direction. Simple high contrast and as little busyness as possible is how Grace sees best. If it is quiet and calm and we present her with something simple to look at in conjunction with an ample amount of time for her to “look and see”, her vision will get stronger and better to the point of normalcy. I can breathe again!
I couldn’t openly admit it to anyone beyond my family, but I was having a really difficult time worrying that Grace’s vision wouldn’t be normal. CMV babies often have cortical visual problems that are permanent and I was devastated thinking Grace might never see the visual world I love so much the way the rest of the world does. Missing out on those “visual experiences” I was obsessing over wouldn’t devastate Grace of course, she would grow up loving the only world she’d ever “seen”. So, ultimately, that was my own hurdle to overcome. But after yesterday, it seems like this virus left my babies eyes intact.
-Happy two months, baby Grace. Lilly and I made cupcakes in honor of your little miracles, your peaceful disposition, and your simple existence in our world. We love you, and we love cupcakes, and Lilly was thrilled to celebrate! Don’t worry, it will soon be your turn to help with cupcake making.-
L loves pink frosting.
It’s her fav.
(This is what happens when you take cupcakes away from my two year old…)
“Oh wait, I still have an entire bowl of pink frosting that Mom’s going to let me eat? I’m ok.”
Mixing the frosting is serious business.
L’s favorite place in the entire house.
Our end result, pretty pink cupcakes for our pretty little baby.
Here’s to many more months of joy, and many more glimpses of life’s little miracles!
Mom says
Great job helping mommy Grace and Lilly!