3 Weeks - Revisiting CHOP Tomorrow
When I was pregnant, I harbored a secret fear in my head. I was convinced that my unborn child would be born with a heart defect. My path had crossed too closely too many others who's little ones had heart problems in recent years, that I was convinced it was a sign from God that I was somehow destined to travel this path as well. It was even reaffirmed recently when Maura received some hand-me-downs from an HLHS baby. Small world, huh? Perhaps it was just God's way of preparing me for a different kind of NICU journey...one that is just as unclear...but thankfully with a happy ending...
We've come a long way...
Maura's rock bottom moment...being intubated for her MRI...something I never shared pictures of here before...
I held my breath at our 20 week ultrasound as I nervously asked what the heart looked like. Everything was fine! I breathed a sigh of relief. I wouldn't get off that easily.
It seems like a blur now. But tomorrow, we walk back in. We go to see Neurology at CHOP. Obviously things have been going really well for us. Maura has been doing spectacular. She is now seizure free for three weeks! Neurology will be thrilled with the news! They told us we could expect her to have seizures when she came home, but we've yet to see them rear their ugly heads. As she grows, and grows out of her dosing on her meds as well, I get nervous from time to time.
Maura Just this weekend...relaxing at home...almost smiling these days...with her glowing blue eyes!
Of course, I have questions for them. What can we expect? What is the next step? How long will she be on meds for? When does she go for testing again? I'm sure some of them will be answered tomorrow, but many will still be a mystery. Perhaps we'll never see a seizure again. And that would be wonderful!
We've come a long way...
Maura's rock bottom moment...being intubated for her MRI...something I never shared pictures of here before...
I held my breath at our 20 week ultrasound as I nervously asked what the heart looked like. Everything was fine! I breathed a sigh of relief. I wouldn't get off that easily.
It seems like a blur now. But tomorrow, we walk back in. We go to see Neurology at CHOP. Obviously things have been going really well for us. Maura has been doing spectacular. She is now seizure free for three weeks! Neurology will be thrilled with the news! They told us we could expect her to have seizures when she came home, but we've yet to see them rear their ugly heads. As she grows, and grows out of her dosing on her meds as well, I get nervous from time to time.
Maura Just this weekend...relaxing at home...almost smiling these days...with her glowing blue eyes!
Of course, I have questions for them. What can we expect? What is the next step? How long will she be on meds for? When does she go for testing again? I'm sure some of them will be answered tomorrow, but many will still be a mystery. Perhaps we'll never see a seizure again. And that would be wonderful!
Labels: Maura Fern, NICU
posted by Caroline at
9:45 PM
3 Comments:
She is so beautiful. I can't imagine going through all of that worry for your little one. They are just so innocent you don't want them to experience anything but good. hope all went well at the appointment and that she is healthy and happy from here on in. xo m.
A family friend had a child who was prone to seizures, but she outgrew them and is perfectly healthy and happy. I just though perhaps hearing someone's happy ending will help you through a scary time with your beautiful baby!
What a gorgeous baby! We recently had a scare ourselves with our newborn daughter (born last month). After *five* echocardiograms and a week of anxiety, they finally told us that her heart wasn't enlarged or thickened as they had thought. Whew! What a hard road that is to travel, when your little one suffers. Hoping it all works out for you!
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