This is what we did today.
What's more is Gwendolyn demanded it.
In her non-verbal way she let me know she needed snuggles. She needed to hear my heart beat in her ear. She needed my warmth. She needed my comfort. She needed her mother's embrace.
And then she fell asleep.
And I cried.
My heart smiled. And I wanted to freeze time.
It's not that this is entirely new. I snuggle with Gwendolyn every day. But this is the first time she told me she needed me. And it made me think of the times when I couldn't hold her. Two weeks after learning of Gwendolyn's SMA diagnosis she was hospitalized for a month at Lucille Packard Children's Hospital/Stanford. She was six months old and she was suddenly hooked up to a million machines — and she was weak. She choked every time I tried to hold her. And I was scared…overwhelmed…devastated. I used to climb into the hospital crib to wrap my arms around her and fall asleep next to her — I was going to snuggle her no matter what — but picking her up to hold her in my arms had become a scary experience instead of a comforting one. I will never forget a young nurse who made me/helped me get over my fears. She acknowledged that Yes it is different now, but she needs you and you need her. And she helped me learn new ways to hold Gwendolyn so she was supported and wouldn't choke. She propped pillows all around me and on my lap and she put Gwendolyn in my arms. And I cried. She then made me/helped me do it on my own reminding me that You are going to do this at home, so you need to get your confidence up now. And she was right. All of it.
Holding Gwendolyn today, having her fall asleep in my arms made me so grateful for that nurse. It made me hope there are others like her helping scared mothers embrace their child — regardless of machines and tubes and cords — because there is nothing better in the whole world.
And why is Gwendolyn demanding snuggles? She feels lousy. Yesterday she woke up not quite right. And as the day progressed she was clearly fighting something. The poor little sweetie was exhausted and once she fell asleep for her nap her numbers started changing — not what we wanted to see: oxygen down, heart rate up. And then she spiked a fever — and Gwendolyn never gets a fever — ever. We called her pediatrician right away and “bagged her” to collect a urine sample. Because this came on so suddenly we were pretty sure it was a urinary tract infection or UTI — a relatively minor thing that can be treated with antibiotics at home. She's had a few of these in the past and they definitely exhaust her, but they don't impact her respiratorily so in the SMA world they are no big deal. But when we took her in to see her doctor the immediate urine analysis came back normal. They are still doing a culture on it, but the UTI seems unlikely now.
The huge really good news is her secretions are normal — not thick, no color changes — so we are hoping this isn't a respiratory issue. Dr. A said there are quite a few “bugs” going around right now — stomach bugs, flu bugs, 24-hour bugs… bugs. Yuck. So Gwendolyn officially has a “bug” — we don't yet know what type or exactly what direction this is going. We got her fever down with Tylenol and Motrin and once that was gone she had more energy and perked up a bit, but she had a low fever again this morning. She didn't sleep that well last night, no fever, but restless. So…we are watching and hoping this “bug” is on it's way out…but worried.
Today is an official “Movie and Jammie Day!” And a day filled with snuggles — lots and lots of them.