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.

~ by luna on September 19, 2011.

16 Responses to “36 weeks, aka 2.5 weeks old”

  1. Sending strong vibes to Z, hoping she can get all that good food in her tummy without the tube. You can do it Z! You can do it!

  2. It is great that your little one is getting such good care where she is and I’m sure they’re as anxious to release her as you are to have her home :-).

    I’ve been following you silently for a while and just had to say how much I admire you for keeping up with the breastfeeding. From my experience, once you’ve got it going, even for just two feedings a day, you can build it up to whatever you choose.

  3. Hope she keeps right on going with eating and is able to go home soon.

  4. Hoping as hard as I possibly can that Baby Z continues to manage without the tube, and that she is able to come home with you very, very soon.

  5. Praying and hoping that the 24 hours sans tube goes amazingly well. Love, hugs and best wishes to you all as you wait for your little girl to get big and strong.

  6. Love the progress, however slow. and the hope.

  7. Day by day. I am reading with my breath held in hopes that she takes that needed leap. No matter what, in the larger sense, it seems guaranteed that it will be soon.

  8. Just as Baby Z gets stronger, so does Mama. And you will be in a better physical position to care for Baby Z, and super active Big Sister Jaye, when it happens. Promise that you are focusing on your healing, too, dear Luna!

  9. i hope she is able to keep the tube out and really start thriving. Iknow they should waste calories but 30 minutes doesn’t seem like that long of a time, I suppose it is but geez when you’re up in the middle of the night and they are little it takes that long with a term baby, actually a whole hours to feed change etc. Seems like if she can eat take a little power nap and eat a little more. I know I’m beign silly they know what they are doing, but boy would it be nice for you all to be home as a family.

  10. This made my heart swell. So many people pulling for her! She’ll get it when she can. Go baby Z!!

  11. Luna, we went through exactly the same scenario that you are currently facing. I had forgotten all of the tedious details about feeding my preemie, but you’ve captured them all! Our son constantly pulled out his nose tube. Meanwhile, I was pumping every three hours and attempting to breastfeed, more for his practice than mine. He was in the NICU for 5 1/2 weeks. We thought he would never learn to feed or gain weight. Progress and setbacks were both sudden occurrences, and so was discharge. If I recall correctly, we were given just less than 48 hours notice, but when we finally departed our home away from home, we were all ready. I know it feels like forever right now, but she’ll be home before you know it! Stay strong!!!

  12. Off the tube for a week? Wow! We only had to pass 48 hours.

    What you said at the end is exactly right: better to be in the NICU longer now than to have issues at home.

    The first time I ever held one of my babies without their wires being attached to a machine (the wires were still taped on, just not plugged in), it was a revelation. Same with seeing their faces without tubes.

    How are you recovering?

  13. Hoping she makes it all week without the tube! Sending you all good thoughts. xoxoxo

  14. My GOD! I’ve been away from the blogs for a while and only just last night came across this AMAZING news! I stayed up and back tracked through the past months entires and was blown away by your newest daughters journey into this world! What a wonderful thing to read Luna. I am so very happy for all of you. I hope she continues to grow big and strong and is soon home with you, her dad and her big sis.
    Wonderful, wonderful, wonderful, news.

  15. Baby Z definitely knows who is in charge…she is! Yes, it would get frustrating when they would sneak those little fingers up and twisted them around that tube, they would wait until you weren’t paying attention and then in the blink of an eye- that tube was gone! But after a while, like has happened with Baby Z it is decided to leave it out and let them prove themselves. One of things that I learned when I worked in the NICU was that the nurses, the doctors, even the parents- none of them are the boss- those little babes are the boss! This is their show and we are just there to facilitate their wishes 😉 I know you would love to have a date that you could put on the calender to say ‘Baby Z Home Today!’ But from the sounds of how she is continuing to progress, that she is a little fighter and that she has an amazing family who are also fighting for her- it may be a little bit longer, but they will be discussing discharge with you and Mac before you know it! Love and Hugs! ❤

  16. […] soon. Progress was still slow. I guess I expected more since she had reached a gestational age of 36 weeks, and we had hoped she’d be home by then. Mac was going back to work. I still couldn’t […]

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