Calling in the calvary

I spent the weekend learning Gesina's cries. I now have a better sense of when she's bored, diaper change, etc. and even saw some cues for when she is hungry... then, Gesina started throwing up her feedings, pulling out her NG tube on a near daily basis, refusing the bottle, and got my cold from last week. So needless to say, we've had a few setbacks this week and I had to put on my detective hat to see if I could figure out what's going on. Why is Gesina throwing up? Unfortunately the technician who trained me on how to use her feeding tube confused speed with volume controls on the pump. So when I want to feed her 120 ml at 75 ml per hour, I was actually feeding her 75 ml at 120 ml per hour... essentially feeding her at a speed much quicker than she can tolerate. This wasn't a problem when she was taking most of her feeding by bottle but when her bottle feeding started to fall, she was being "super soaker" fed. This increased her vomiting at the beginning of the week until I figured this out on Tuesday morning. Then, her early intervention staff (case manager and occupational therapist) pointed out that her feeding behavior suggests she has pretty bad acid reflux. This MAY explain why she is essentially refusing the bottle at this point. Beyond pursing her lips together to refuse the bottle, she sleeps through feeding times and is impossible to rouse. This child has a serious ability to sleep and has been sleeping about 19 hours a day (because of her cold I think because she is sleeping more this week compared to last). To address the reflux, she is elevated for feedings, elevated in her crib, and I'm feeding her acid reflux formula. We'll see if these things help. I decided to stop nursing her as it seemed to be confusing her at the bottle and she was still having the mid-meal freakout. The more time spent learning the bottle the better considering I work and the bottle will be a constant in her life so she is transitioning to formula.

On Monday the home nurse weighed Gesina and she had gained but only half what they want her to gain. When I told her I was trying to nurse Gesina, then bottle feed her, then NG tube her, which was taking me at least 1 hour and a half before I NG tubed her, she was annoyed that I was not advised more closely on how to feed Gesina. She told me that Gesina was burning calories having her mid-meal freakouts for so long so it was time for me to switch to 20-30 min bottle feeding then NG the rest. I don't know if this will help or not because miss sleepy head is too sleepy to feed!

For me, it's been a rough week. Inserting an NG tube daily is emotionally exhausting. I was successful the first time but the second time was quite a trial. First the tube came out her mouth instead of down her throat. Then, after having finished inserting the tube and taping the tube to her face, she turned bright red and the tube started to curl out of her mouth. I nearly lost it after that. Adrian talked me down and I finally got it in. Gesina has discovered her hands and they are in her mouth and on her face often so this NG drama is likely to continue. One idea the OT had was to put gloves (or socks!) on her hands so she can't rip the tube out so easily. I'm proceeding with caution but am becoming more open to a g-tube at this point. I promise to let her ride the cold out and see if the feeding goes better but I'm not going to close my eyes to the possibility that she'll need a g-tube as the NICU doctors had mentioned as an option.

To deal with me and my stress/anxiety/hormones/adjustment, I've reached out to my neighbor for food, hugs, and conversation (hi Donna!) when needed and on Saturday my niece (yay Kimberly!) is coming to help me. This is me calling in the calvary! I admit I need help and I'm actively seeking it. I hate it, mind you, but I recognize that I'm in a situation that is difficult and need support. Hopefully next week gets better as Gesina fights her cold, I have reinforcements, and I have more time to adjust to my new normal. Until then, here's a picture of Gesina at 9 weeks old today.