If we’re friends on Facebook you probably already know a lot of this… Nora’s appointments at the U last Thursday went really well, we got all good news!
Eric wasn’t able to join me, per usual, so I was up at 5:30am getting ready and ended up having to wake Nora at 6:30am so we could leave our house by 7am. Thankfully she took several ounces of milk, sometimes she pushes the bottle away first thing in the morning, especially if she’s woken. So I packed everything up, strapped Nora into her car seat and we were off. Thankfully she slept almost the entire way there, and babbled to herself the remainder of the time.
First stop when we arrived, Java House. Oh how I’ve missed their dark chocolate frappes and cherry almond scones. As I was waiting for my order a strange calm came over me. Every time I’m back at the U I’m reminded of harder times, our long months in the NICU, so much worry during that time. And yes, there were good times there too, my work at the hospital and the amazing people I met, and miss dearly. I miss Iowa City so much, and our life there. Just this morning I was looking outside and thinking, oh, if we were still back in Iowa City I’d throw Nora in the stroller and walk to a coffee shop. That isn’t possible here. Nothing to walk to… Makes me a little sad, I miss my old life, and yet looking back, I’d never want to relive all the horror of Nora’s early birth. We’re in a better place now. Perhaps I can learn to enjoy my time in Iowa City during Nora’s visits, and be thankful she goes home with me each day.
Our first appointment was for a repeat hearing test with otolaryngology. The test itself is simple, they stick what looks like an ear bud into each of Nora’s ears, separately, and push some button on a small handheld device. Apparently the device sends a sound into Nora’s ear and then records the vibrations of the inner ear to signify the sound was successfully ‘heard’. I’m guessing I’m not explaining that correctly, but you get the idea! We’ve had these tests every 3 months for her first year of life and now will continue every 6 months until she is five years old. The reasoning, her meningitis, which is known to cause bony growth of the cochlea and thus hearing loss. Great, four more years of worry. For now though, all is good, she passed with flying colors!
Next we met with the high risk infant follow-up team, which we see based on both her premature birth and her meningitis. They always hand me a packet of questions to answer about her development, and then two doctors ‘play’ with Nora for roughly an hour. They see what skills she has mastered and such. They were extremely happy with her growth, up to 15 pounds 1.1 oz according to their scales, and just over 2 feet in length. So still small, but following her roughly 8% curve for her adjusted age. We talked a lot about her eating, they still recommend fortifying my milk, which is another story I’ll mention below… They also suggested letting her play more with food, even if she doesn’t eat it. But you know me, I hate messes, so this is going to be hard for me! They suggested putting yogurt on her tray to see if she would feed herself with her hands. So I tried that. She did put her fingers in her mouth a few times, but I’d say she was much more interested in smearing it everywhere, including on me. (Do they make disposable covers for high chairs???) Overall, they were pleased with her though, rating her above her 8 months adjusted age in all categories. Sleeping was also mentioned too and I admitted still rocking her to sleep for naps and at bedtime. They suggested starting to see if she will put herself to sleep, so rocking for just a few minutes, putting her in her crib awake, and not taking her back out of her crib! They said if she cries I’m to check on her after one minute, and then keep doubling the time, so at 1, 2, 4, 8, 16 minutes, etc. Well, I tried this with one of our naps, she cried for an hour with no sign of laying down or going to sleep on her own. So I failed, picked her up, and within 5 minutes she was asleep from rocking. I guess I have to work on this as much as she does…
One of my concerns with Nora was her not responding to her name. The doctors assured me this is normal, as Nora is so, so busy that she just doesn’t take the time to really pay attention when I call her name. They said this will come in time as she gets older and recognizes her name.
Our last appointment of the day was with the immune team. There isn’t really much examination with them, as what they need to examine is really more internal, and thus, more blood tests. The last test they wanted to run, which was drawn Thursday, looks to make sure that Nora’s immune system not only turns on to foreign invaders, but specifically recognizes the invaders she has been vaccinated against. The results of this test will determine if she can receive live vaccines at her 12 month checkup, which would include chicken pox and MMR. They also rechecked her antibody levels, and will continue to recheck her IgG (one of those antibodies) monthly. We don’t have any of the results back yet, but I’ll update when I hear from her doctor. And thankfully the blood draw went really well, one poke, and she hardly cried, being they applied the numbing cream!
So about fortifying my milk… Nora has been pushing the bottle away more and more, and I can’t seem to really figure out why. Maybe she just really isn’t hungry sometimes when I offer her milk… Or maybe she is learning she doesn’t like the taste of my frozen milk, which I happen to know smells and tastes like vomit thanks to the high lipase levels in my milk. For months Nora drank my frozen milk with no issues, but the high risk doctor said it’s very possible that as she is tasting solids foods, she is learning what tastes she likes and doesn’t, and my milk might now be one she doesn’t care for. So for the past 24 hours Nora has been on formula only, as I’m seeing if she will take in more ounces. She pushed the bottle away this morning, but it was first thing when she woke and thus maybe she just wasn’t ready to eat yet. I’m going to be so, so sad if I have to donate all my milk and completely switch her to formula. I mean, I know she is almost a year actual, but still… All those hours attached to my pump. And wanting Nora to have breast milk over formula… Ugh. Not sure how I’ll deal with that should the time come…
*** I probably will be writing several more password protected posts in the coming weeks. I’ll leave the password the same, so if you already know it, it should work for the future posts. If you don’t know me in real life and would like the password, feel free to email me at firstname.lastname@example.org. ***