36 weeks, aka 2.5 weeks old
Tomorrow marks Z’s gestational age of 36 weeks — i.e., the day by which we thought she should be home.
I should know better now than to say “should,” though I still can’t help myself.
She does seem like a different baby than she was two weeks ago, soon after birth. The nurses we’ve had more than once agree. She is more alert and responsive when awake. Her face is filling out (though she is still tiny). Her color is beautiful. Her little personality is emerging. She has been eating more by mouth. But she still can’t get all of her feedings down without help from the tube in her nose that fills her tummy…
…but that didn’t stop her from pulling the thing out AGAIN last night.
Last time she pulled the tube out, they replaced it right away. It was awful. I mean sure, I was proud of her for being so feisty, but she cried so hard when they replaced the tape on her delicate little cheek, which made me cry as I felt so helpless. Then they had to x-ray her again to ensure it was in the right place. No one wants to see their baby in pain, or expose them to radiation. Much as I hate that damn tube, I didn’t want her to yank it out again.
Yet this time rather than replacing the tube, the night nurse, bless her, thought they should give her a chance to take more by mouth. The nurses are supposed to give the babies 30 minutes to get a feed down by mouth before they supplement the rest by tube. This is so they don’t waste too many precious calories working so hard to eat. If they lose weight, it defeats the purpose. But not all nurses have 30 solid minutes to feed one baby, nor do they all have such patience to keep trying to wake them up when they begin to doze. They have other babies to care for too. So they switch to the tube.
Today her nurse was so patient, giving her a full half hour to get bottles down when I wasn’t there. She worked hard to keep her awake, to give her breaks. And little Z did pretty well. She couldn’t get it all down, but she showed signs of progress.
We’ve been working so hard on breastfeeding too, though I am only there for two meals per day. She has done well, but she is still inconsistent. Sometimes I just feel so defeated as I sit there, trying to wake her from a comfy snooze on mama to nurse. “Come on, Z, time to eat,” I tell her. “This is how you’re going to get big and strong, Z, big and strong so you can come home with mama, dada and big sister.” I know that if she doesn’t eat, the tube goes back in, and she can’t come home. Simple as that.
This morning, Z’s pediatric team approved keeping the tube out for 24 hours to see how she does. They want to see babies off the tube for up to a week before they can go home. So Z has to both eat well by bottle and breast AND gain weight. Consistently.
When we saw her today, without any tubes covering her little face, I finally saw her. I mean, I’ve examined every millimeter I could, but she is still covered with monitors and wires and connected to very large machines. Until today, a tube has been taped across her cheek and into her nose. Yet when I saw her precious little face, I happily kissed her bare cheeks and thought this little girl is coming home with us. Not today, not tomorrow. But soon. I felt so hopeful.
Now is really time to prove herself, to show whether she is nearly ready to come home. So this could be one step closer, OR a setback indicating she just isn’t ready yet.
Even though I’m hopeful, I’m afraid she’s just not there yet. She’s working so hard, but some of her feedings are still incomplete. Every morning I call and ask about her meals and her growth. My fear is that tomorrow morning they’ll tell me they have to re-insert the tube because she didn’t eat enough and lost weight.
The reality is I know she can’t come home until she’s truly ready. We don’t want to get home and worry about every single calorie, every ounce of weight. We certainly don’t want her to have to go back.
Either way, it’s all on her schedule. It’s really up to her now. It always has been.