Shirley's heart is pretty much the same as it has been. Her medication doses were increased after her last appointment because of her growth (12lbs 3oz!). She will have another echo at her next appointment. If all goes well, Dr. Penalver mentioned that they will be toying with the idea of weaning her off some more of her medications. Obviously, it would be ideal for her to be weaned from all of her medications, but we would would be excited about even a slight decrease.
GI and Feeding
Shirley is still not feeding much better than she was before. She has good days and bad days. Although my milk supply has come back up, she is still not interested in breastfeeding. We've had two visits to SCH GI clinic in Federal Way with Dr. Len. She thinks Shirley looks too good, and feeds too well, to justify placing a G tube. Since Shirley has no oral aversion, and she's a chubby baby, Dr. Len wants to exhaust all options before ordering the procedure. She is quite convinced that Shirley's issue with feeding stems from chronic reflux, and not low energy or a physical inability to feed. So now we're trying to tackle her reflux before trying anything else.
At our first appointment Dr. Len noticed mucous in Shirley's stool, so she suggested we cut cows milk protein out of Shirley's diet (which meant my diet too). Since Shirley has been on fortified breast milk, they switched her to a peptide based formula that's more broken down and easier to digest (still derived from cows milk... which confused us a little). She also prescribed a reflux medication. It's been about 4 weeks since that first appointment and we haven't noticed much of a change in her feeding, but she is spitting up much less. At our most recent GI appointment, Dr. Len was glad to hear that about the decrease in spit up, so she switched Shirley's feeds to plain breast milk, but added about 7oz total per day. This is a huge step! Especially since the new formula tasted horrible and Shirley wanted absolutely nothing to do with it. Although we are excited about Shirley being fed straight breast milk, the increase in volume will give Shirley even more catching up to do in terms of oral feeding... but we'll celebrate our small victories when we can!
People are always asking me how Shirley is doing. My most common answer is some form of "she's fine, but she still won't eat anything." I say this partly because I'm too lazy to elaborate, and partly because I've been totally obsessing over her feeding issues, so it's really the only thing on my mind. What a bummer of an answer! Although it's essentially true, it's not the whole story.
Shirley is doing remarkably well. We are all doing well. I have to keep reminding myself of this fact. I am often so frustrated and worried about the slow, almost non-existent, improvement in her feeding that I forget how far we have come. I'm so busy wishing for at least a semblance of normalcy, when I should be relieved that oral feeding is my largest concern. I constantly have these thoughts bouncing around in my head "What if I'm not trying hard enough? If only I had pushed her more when she was younger! Is she too old to learn to breastfeed now? Will she ALWAYS need a tube? What if some other woman were her mother? Would she have been able to get Shirley off the tube and feeding by now?" They repeat themselves over and over, one thought leading to the next. I know they are not healthy, but they are my thoughts all the same. Before writing this, I spent an hour or so reading over our past blog posts when Shirley was in the hospital. Most of the posts brought me to tears... and it helped me to see just how well Shirley is doing these days. She is growing, she is happy, she is deliciously chubby, and she is loved.
Joseph and I have come a long way as well. Dosing and administering medications has become second nature, prepping her food and feeding her isn't an ordeal that takes an entire hour anymore! We're no longer jumpy and overly anxious whenever Shirley is unhappy, we know that she is a baby... and crying doesn't always mean something terribly scary is happening. We have come so far, and there is still a ways to go. We are learning, we are growing, and I am so thankful for that.
I constantly feel inadequate. I believe I am always going to feel inadequate, because the truth is, I am. Nevertheless, for some strange reason God chose me to be this sweet little girl's mother and I am confident that He will equip me to do the job.
Cute photos below!