Right now, my heart is heavy as we approach Jaelyn's next heart surgery in the upcoming months. This time in between has been wonderful. Even normal. We brought her home from the hospital.We've shared the little things that bring us such happiness, like the smiles, the "goo-goo ga-ga" sounds, the tender, sweet moment when she falls asleep in my arms, a precious mommy-daughter glance.. of recognition. These things I try not to take for granted. I try not to spoil the moment of her crying with frustration. Instead I try to cherish the fact that I have a daughter that is crying. And that is blessing.
I got off the phone with the cardiac surgery nurse practitioner up at Primary Children's Hospital yesterday, and I cried.
On a weekly basis I have to weigh Jaelyn at the pediatrician's office and report her weight to her cardiologist and the cardiac surgery nurse practitioner every Monday. This Monday was the last straw; "Well, I called over to Dr. Hoffman's office (cardiologist) and had a chat about Jaelyn's weight. At this point it looks as though Jaelyn will need to have a feeding tube put in."
This cardiac surgery nurse practitioner (too much of a mouthful anyway) said it without even blinking. (I'm sure of it.) I wanted to cry. And sure enough, here they came, pouring out of me like a bucket of water. "You'll need to schedule an appointment with Dr. Hoffman early next week to get that placed. Or you could come up here and we can do it." Did she just say that with a smile?
All of these things come and go for them. This is their job; but for me, this is my child. My daughter, my angel, my sweet baby with a heart problem.
I know it's just a feeding tube. And I know we've been blessed to not have to come home with anything except a pulse oximeter to spot check her oxygen with. I guess I could be more positive, more grateful. I mean there are some good things about it. Like being able to give her the rest of her food without a struggle. It's exhausting for her to eat. This will give her what she needs to gain more weight. She won't fight her meds that I have to give her every morning either. I assume it's the fact that I'll have to look at that stupid tube on her precious, and gorgeous little face and be reminded.. all day, every day.It was like the day after we got home from the hospital and we were having dinner and enjoying Jaelyn being home cord free. When a knock came at the door, it was Apria Healthcare. Unexpected, he was here to get Jae set up with her pulse ox. He ran us through how to use it, and as he put that cord on Jae's foot, it ate at me, until I broke down.
I've been meaning to get Jaelyn's pictures taken professionally and now we have a short window to get them taken without anything on her sweet face. I'll see what I can pull off this weekend.
So, today I've been on Netflix trying to find a new show to delve into and stumbled upon Grey's Anatomy. I like medical shows and I've heard the hype about this one in particular, so I tried it out. First episode, wasn't too bad. Then episode 2. The story line was about an intern who's trying to find her way as a respectable doctor. She has a bad day and decides to go to the nursery to watch the newborns to find some peace of mind. She's looking about, adoring these beautiful babies, when she sees one start to turn blue. My heart stopped. I've sadly seen this before... on my newborn; just a few days before her heart surgery. Come to find that this child has Pulmonary Atresia. This is similar to Jaelyn's heart condition, Tricuspid Atresia. I found myself again, in an endless lake of tears. George knows someone whose grandchild has pulmonary atresia.
I'm trying to gather myself together and not have a pity party for myself. I try so hard to see the good and the positive parts of this journey. But some days get me down, like the last two days. I keep hearing, "Be still, for this too shall pass."
And so, here's to one more week...
