About 90% of my day now revolves around boobies. My oh my. Here's more than you probably want to know!
Clara has been nursing well for the past couple of weeks using a nipple shield. It helps her latch on and she sucks great. Yesterday, the lactation consultant came and watched her nurse again. We discovered that while she appears to be nursing really well, she's not actually getting a lot of milk. This is clearly not due to my supply which is out of control, so it has something to do with the way that she is sucking and swallowing. She's a smart baby. She's trying to protect her airway and not choke or aspirate. She's had a lot of trauma to her neck and throat during her life and she's just being very careful and cautious. That's probably why she likes the breast so much, but doesn't have any interest in the bottle. She is able to control the breast better. So even though she's been seeming to nurse well for the past couple of weeks, she's not getting as much as we thought. She's careful how she sucks to not get too much milk. Because I've got such a big supply, she's still getting a good bit - enough to stay hydrated and healthy and happy, but not enough to gain weight and thrive. Today, we have made a few adjustments. We are trying to nurse for shorter periods of time (20 minutes or so), but more often (every two hours). We've gotten a different size nipple shield to change the way that she latches on. And we've added this bizarre contraption called a supplemental nursing feeder. I put hindmilk that I've pumped into the feeder and we supplement it with milk fortifier and lipids (fats) to give it more calories. Then, as she's nursing, she's also getting this extra milk. Sounds like a lot of trouble, doesn't it? It is.
Since Clara still lost weight last night (down about 35 grams) they were going to put the NG tube back in today and resume her tube feedings. I asked at rounds for one more 24 hour extension (I made it through college never once asking for an extension, but I've gotten three this week) to see how she will do with these adjustments. Honestly, I think it's unlikely that she will gain the weight we need to see, but I want to be sure that we've done everything we can before putting a tube back in. She is getting better and stronger every day, but may just need more time. If we do have to put the NG tube back in over the weekend, it will still be just to supplement my breastfeeding. She might get two ounces from me and then a third ounce through the tube at each feeding. If we can establish a feeding plan that works, even one with a feeding tube, we'll be able to go home. After much deliberation and many conversations, Robert and I have decided that if she does require a feeding tube to go home that we will have a G-tube surgically placed in her stomach (instead of the NG tube that goes in her nose). This is more invasive, but also much safer and more stable. She will be able to keep it as long as she needs it while she continues to build her energy and confidence with oral feeds. An NG tube runs a risk of aspiration and is also an intrusion on her throat and airway which we want to keep open and clear.
There was a time when we thought it would be inevitable that Clara would go home on both oxygen and a feeding tube. We were very encouraged by her feeding progress and obviously hopeful that we might not have to go home with any tubes at all. But we are still so thankful that she's breathing well on room air and that she is learning to eat. If the worst thing that happens is we have to have one more surgery for this G-tube and go home with it for a few weeks or months until she learns and gets stronger, that is not a bad problem to have.
I have some great photos of her smiling the past few days. She's very happy to be tube-free, too. But I'll have to upload them later. I'm just squeezing in this update between feedings. Nursing every two hours is nearly around the clock (nursing - 25 minutes, burping -10, pumping- 15, one hour off and do it again!). I'm so thankful that Clara is such a sweet, happy, good natured baby and that she fusses very little. We're both trying to rest some in that one hour off.
Thank you so much for your continued prayers. I was so frustrated and disappointed yesterday morning, but feel a peace today about where we're going. I'm still hopeful that maybe Clara will gain some weight today, but if she doesn't, I'm also okay with the alternative plan. We just want what is best for her. We appreciate you praying us through this last step towards home. I think we'll be there in the next week or so, one way or another.